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NEW JOURNAL!

I made a new journal.

me_resurfacing

me_resurfacing

me_resurfacing


ADD ME.

I will NOT be using this journal anymore.

<3
I know I haven't updated in forever...honestly things have been really crazy for a while now, and I haven't ahad a lot of time to be online.

I do plan on giving a full update very soon though.

For now I just want to say that last friday...I got to see RENT. the broadway tour.
it was absolutely the best night of my entire life.
It was amazing.
A dream come true, seriously.
Being that close to people, and the very thing that means so much to me was breathtaking.
Hearing the words I have permanetly on my skin sung live was an experience I will never forget.

RENT is an amazing, beautiful thing. It really, really is.

Anyway..thats all for now.

<3

Feb. 3rd, 2009

Went to the urologist today...
he thinks i might have a kidney stone, or some sort of blockage.
I find out next week.
Joy.
It doesn't add up, to me..but hey, I guess he's the doc, right?

-------


So what do you do when you feel like your heart has been ripped out all over again? When all you can think is "this can't be happening."
When all you can do is cry harder than you've cried in months.
I'll tell you what you do.
You go and curl up in your bed. and you cry yourself to sleep. and you hope and pray you wake up in the morning to find out it's all been a very bad dream.

and the funny thing is, i only have myself to blame.
the only person i can be mad at...is me.

I need to sleep.

Right now I'm in a position where posting what is really on my mind would be a mistake, and something I would end up regreting very much tomorrow.
So for tonight I'll just write out the basics of what's going on:

Steve got laid off, which puts huge stress on my family.
My health is going to shit faster than I can make doctors appointments for new symptoms.
I haven't gotten a good nights sleep in months.
I am mentally worn out.
Emotionally I've put up all these walls and hidden myself as much as possible because I'm just so tired of playing games and being hurt.

My head is killing me. Sometimes I think it is really, litterally, killing me. The pain never stops. It hurts so bad I struggle to get out of bed. Nothing helps at all. Nothing. I have found no relief in 18 months. I am very scared that I will never find any relief. My seizures are out of control again, with no explanation why, even with another round of tests - EEG, MRI, etc...they always come back the same, and I never get any explanations. Just uping and switching meds.
Now this new pelvic pain and bladder issue. It came out of nowhere. Again, no explanation, no reason. Just there. Now I hurt constantly there, too.
If that doesn't wake me up at night, my head does, and if neither one of those issues wake me up, I'm getting woken up by nightmares, or just waking up for no reason at all.

I feel like my body has betrayed me. I feel much much older than I am. I will be 23 in 2 weeks. My life should be so different, and so much more than it is right now, and I am frustrated and angry that I have to deal with the things I deal with. It isn't fair.

The simple truth is just that I am tired.
Tired of living in pain, tired of suffering. Tired of never having any answers. Tired of feeling hopeless. Tired of feeling my family suffers because of me. Tired of feeling like I can't really rely on anyone. Tired of feeling like I can't turn to anyone, or reach out for help, because I fear seeming weak, or needy.
The truth is that I am very, very tired of living like this.

And it is 2am. and I need to sleep.

Just so nobody worries - I am not threatening, or thinking about harming myself. I'm just tired in every way it's possible for someone to be tired.

Goodnight.
<3

Jan. 26th, 2009

Health still sucks.
Is getting worse, in fact.
Seizures are bad..and now instead of staying sitting/laying..I've started to get up and apparently trying to walk..which makes me fall.
I have several wonderful bruises.
My head is a complete mess, and the weather does not help.

Still have this pelvic pain that won't go away, and trouble going pee.
So wonderful.
and just when i thought thing's couldn't get better, my family is falling apart..my mom is..a mess.

and Steve, (mom's husband) got laid off today.

so yeah, all in all..a wonderful day today.

on top of everything else...

well my personal life isn't getting much better.

haha.

i need a hug.





------

You and I share the same reflection
why dont you see that we cannot survive in this condition
If you're cut, I'll bleed
So go on carve into your heart, I could use a new scar or a brand new start
Slowly severing the only memories that bind us as one.

I just dont know
How to win with you
And I cant let go, part of me is you.

We have lost all communication when words fall on deaf ears
I'm starting to feel a transformation.
How did I get here?
I dont recognize my own reflection its a ghost of what once was
Gone from relative to stranger, separating body from mind

I just dont know
How to win with you
And I cant let go, part of me is you.

It all comes crashing down.

I realize I've been missing, and distant lately..and it's really just because things are crazy for me and...much of the time, I'm not sure which way is up.
Trying to figue out what's wrong with me now...this pain in my pelvic area. It won't go away. It's killing me constantly First they thought it was just because of PCOS..then I was told it's endo..now I'm being told they're not sure what's wrong with me, and they think it has something to do with my bladder. I don't know. I've been shuffled around to so many doctors that my head is just spinning from all of these potential diagnoses and stupid doctors and everything. I just want some answers. I want some damn pain relief.
Now the most recent doctor I'm seeing won't perscribe me anything for pain because he doesn't know what's causing it. So basically I'm just supposed to suffer, I suppose. Everyone keeps telling me to take ibuprofen. Damn I'm killing my liver with all the ibuprofen I've taken over the years, and it doesn't do anything at all for me anyway.
That plus my head still hurts, of course. I was dumped by my neuro..and referred to another headache guy..who was supposed to contact me, but of course I still haven't heard anything, so now I'll have to play phone tag with several people this week. and round and round we go. but you gotta play the game, right?
My seizure activity has increased like..whoa. lately. Not sure what's up with that. I don't really want to think about it, or think about the possiblity of more tests and med changes, so for now I'm blaming it on stress and lack of pain control.
But I did fall the other night. Apparently having a seizure in my sleep I got up, and then fell knocking everything off my shelf. It was so great, hah. Lucky my sister found me.
So who knows. I'm just pushing my way through the days, surviving as best I can.
Then of course I'm having tons of family issues - my mom is going through a lot and being really crazy lately, and it's starting to worry me. She needs rehab.
My exended family is just going through a lot too, which adds stress on everyone.

and then we all found out that my great uncle Jerry. (I posted about him a while ago, asking for advice about his weird health issues) has been diagnosed with colon cancer and chronic...colitis? something like that.
At this point he has 2 surgical options..one would leave him without a colon and rectum, so he'd have to have what I lovingly call a crapsack..and the other..I don't remember exactly what it does, but it's not at all pleasant, either. Or he can choose to do nothing.
Of course at this point he's saying that he's 70 and he's lived his life and doesn't want surgery...but since none of us want to lose him, we're all hoping he makes a different choice.
The whole thing just really sucks, and is really hard.


PLUS issues I'm having in my personal life..that I'm not exactly ready to post about yet...things are just...AHHH. lol.
Let's just say I'm fighing this battle in my heart and in my head. I'm not sure which way is which..and...I'm just confused.
lol.

So basically right now things just suck, and much of the time I feel like I'm only holding on by a thread. A very thin one, at that.
But I'm still here. Still reading. I just don't have much to say these days.

love you guys.
<3
me

Purge.

I'm super upset today..sooo..hang in there with me, please?

Doctors confuse me so so much.

I go to the gyno because I'm having very unpleasant girlie problems, I get an ultrasound, and she tells me that I have multiple cysts(no surprise) and it also looks like I have Endo. And considering my symptoms now, and over the years..it's likely. She tells me to wait a month, we'll repeat the US, and go from there...if things still look icky, probably do a lap to see whats really going on in there. Okay, fine with me, I could live with that. A couple days later the pain I'm having gets a lot worse..after multiple phone calls to the doctor, talking to the on call doc, etc..I'm convinced I should probably go to the ER. So on Saturday I gave in and did that. My pain was at about 8-9. I could barely walk, and as soon as they put even a little pressure on me I was in tears. The ER doc repeated the pelvic, and the US...found cysts, (DUH)..gave me a few shots of dilaudid, and sent me home with a script for Vicodin.
Vic does absolutely nothing for me. I might as well be eating skittles. Sunday was horrible, and today I called the doctor again.
She called me back and informed me that she saw the US that was done in the ER..and it actually looked better...and she thinks the cysts are from ovulating and they'll go away on their own, and i probably don't have endo after all..and she doesn't want me to do anything further, she just wants me to wait it out. and that's that.
So now i'm like...what? I mean she can't tell me that it's nothing. and I KNOW what cyst pain feels like..because I've been dealing with it since i was 12! this pain is different.

So here's what I know:
I am in severe pain.
I am having trouble urinating. (which i told both the gyno and ER doc)
I'm having ALOT of discharge..some of which is a very gross and not normal color.

This is not just a cyst. and now I don't know what to do...go back to the ER and spend hours there so they'll ship me out with more pain meds?
Go to a different doctor..who will look at my chart and believe what the other one said?
I don't know.
I'm so frustrated.
I'm so tired.
I can't sleep for more than an hour at a time because the pain wakes me up..
I have enough to deal with, and I don't need this too.
Blah..

so this..plus other emotional crap..I'm basically a wreck today.

Update Update Update.

I know I haven't updated before Christmas, and I've been meaning to..but everytime I open Semagic I just...don't know what to say.
I feel like things are falling apart around me..yet are completely amazing at the same time..and I'm not quite sure how that can be.

I guess I'll start by saying that I hope everyone had a great Christmas, and saying Happy New Year! lets hope 2009 is wayyyy better than 08 was, right?

Before Christmas I found out that I'm anemic, which explains some health stuff that's been going on...did some med changes which killed me...got put on some psych meds that made me psychotic for a while..then things calmed down a little..but still nothing changes. My head still hurts, and I still have seizures.

My Christmas was good. My fam definately surprised me this year. My mom and Steve got me a cell phone, and actually put me on their plan. So I have unlimited texting, and free nights and weekends.

My new number is:

952-356-7959


Please add this number and text me! Especially Greens! I lost your number during my phone switch, and I miss texting you.
I also got money, a few movies, and some other things.
So I was spoiled this year.

Since Christmas, my health decided to give me another oh-so-wonderful surprise.
Endometriosis.
Now, I've had PCOS all my life, and have been used to bad period cramps..and used to getting a painful cyst every now and then..but over the past month or so..I've been having constant pain, and trouble going pee.
I went to the gyno, and after several tests, and a vaginal ultrasound, she said it looks like endo.
She told me to repeat the ultrasound in a month, and if things still look icky, we'll talk about surgery..okay fine.
Well yesterday my pain shot up to about a 9..and I almost went to the ER..talked to the on call doc today, and he basically told me I should go to the ER, and that he'll talk to my doc on monday about moving the surgery way up.
I still haven't gone to the ER, because I am so so so SOO tired of ER's and hospitals and stuff..and I know that I'll just lay there for 5 hours and then they'll hand me a script and send me on my way, and what's the point of that?
So Blah.

Besides that..on new years eve I got dumped by my neuro. He's referring me to another headache guy, I guess. Sigh. I just don't know anymore...I'm tired of doctors giving up on me, too.
I'm trying not to give up on myself, I try and keep a good attitude and tell myself that I'll get better and everything will be okay...
but sometimes that is just so hard to believe. Because so many things keep going wrong with my health and I don't get it...sometimes I feel like I'm falling apart from the inside out.
Anyway, new years eve was fun, had a party with the neighbors...then like I said, the past few days, not so fun with lots of pain..

I haven't really made any resolutions this year, and I probably won't..except, to update my journal more often. At LEAST once a week.
I did create a new journal, and as soon as I get my layout and everything, I'll post it here and add everyone...I'm kind of excited to put this journal to rest.

Anyway..I think that's all I can handle for tonight..

any tips on dealing with endo pain?

<3
me
For several hours now, I've been struggling to find words to describe what I think and feel. No matter what, I feel like things don't come out right...but now I decided that doesn't matter.
Cause after all this is my journal so I'm free to say what I want, no matter how it comes out.
So when you read this please realize that it may not make sense, and these are just the ramblings of my overfilled and overworked and very tired mind...but these are also very real, and very raw emotions. Please realize that every word of this is truth, and there is a lot of it that I am terrified to write.

I've been doing so much thinking lately, about the last 7 months of my life since I've been back here..about the decisions I've made, the things I've done, the things that have happened..about everything..
When I first got back, I lived recklessly. I didn't care about myself, I held no value in my life. I made horrible decisions, drank, did drugs..I ran. I did anything I could to run from the hurt and the anger and the pain and the loss...anything I could to run from the sheer agony of feeling like my soul had been ripped out of me..and every day when I looked into the mirror I reminded myself that I was the one who made that decision, I was the one who left..and even though everyone was telling me it was the riight thing, and I was so strong for doing it..I hated myself for it.
I was full of so much self loathing that I was doing anything I could to endanger my health, my life, further.
Then one day I went to the doctor, and he basically told me that if I didn't stop doing drugs, I was going to die.
I stopped. But not for me. because I still didn't care about me. I stopped for my sister. I stopped for the people I know do care.
Then I met Sam. He was different, and exciting...he showed interest in me, in my thoughts...so I burried myself in him.
Through our whole relationship, I always felt that something wasn't right. Something was missing..something was wrong, out of place. But I didn't care. I ignored the feeling, I burried myself in him, and let him become so much of my world, and take a lot of me.
I was still drinking though. Too much. July was a bad month, and when I woke up next to people I didn't know, with no idea how I got there, besides what Sam told me..I realized I needed to stop. That same night, I had a dream..a dream I will never, ever forget.
I was walking along a road at night, looking up at the stars, and just thinking..when someone walked up next to me, and started a conversation. This person told me I needed to value myself again, love myself again..and so many other things I will never forget.
After that I started getting my life back together. Doctors, meds..everything.
I started going to therapy, I started learning about myself.
I started loving myself again..I started valuing myself, and my life again.
and I realized that I did make the right decision for me at the time, no matter how much it hurt.
All the while things were going downhill with Sam...
Then the pregnancy, and losing it..that was pretty much the end of our relationship.
but its okay, and i wasn't, and am not heartbroken over him. because it was never really right to begin with.

Now..now it's December. Almost Christmas.
And...
I'm proud of myself, and how far I've come. I have grown so so much, and learned so much about myself..and have finally learned to really love myself, and value my life.

Yes. I'll admit..a couple weeks ago, I made bad decisions. I did drugs. Again. Yes I am fully aware it was a bad decision, could have killed me, etc...yes, my doctors are aware.
No, I will never do it again. Yes my therapist is aware, and yes we're adding treatment related stuff to my therapy as well.

Anyway..now I just feel.....

Tired. Tired of being alone.

I mean I know everyone on earth wants to be loved, and deserves to be loved...but now especially that I've learned to value myself even more..I want to be loved, and am tired of being alone.
I want to mean something to someone. I want to wake up with someone, and go to sleep with the same person. and feel safe. and know that they'll always be there.
and I just don't understand why it seems like I don't deserve that...
I mean, I should deserve that, right? I'm a good person...I deserve someone..and sure by societies standards, I'm not beautiful..but I don't think of myself as ugly, either..I don't know.
I'm just so tired of waiting, of hurting, of trying to protect my heart and hold it all together all by myself. I just wish I had someone else around to pick up the pieces when I drop a couple, or to pull me up when the waves are going over my head...
I'll be 23 in 2 months..I want to start living my life..and I'd like to start doing that with someone I care about and love, and someone who does the same for me in return.
I mean I'm not asking for prince charming here, and I don't expect perfect...
just someone to love, and love me.

and i know i sound really really pathetic right now. I know I do. I'm just so tired of trying to hold things together by myself..and I'm so tired of trying to protect my heart from being hurt again.
I'm also tired of sleeping alone, but that's a different story.

Anyway..I don't know what else to say.
My life hasn't been perfect, but I'm surviving and doing the best that I can..trying to navigate the confusion.

I don't know...there's so much more, but I have to end this for now...more later.

<3

Cold temps and me do not mix.

So, it is very very cold in this wonderful state of Minnesota.  I believe the high temp today was a whole 5 degrees. Factor in the wind chill, and it's fucking freezing lol.

Being too cold for too long is a seizure trigger for me. I know this, I am not stupid.
Or well, I guess that is yet to be decided.
Because today I decided that the sidewalk and stuff needed to be shoveled.
Thanks to the snow we had yesterday, and the blowing and drifting overnight.
My mom physically can't do it...my sister...
Well, she's 16 and lazy.
Steve was at work..so I decided it should be my job. I insisted on doing it.
So I got on my warmest clothes and stayed as warm as I could, and went out and shoveled.
and I got the deck and the sidewalk done, when I realized..Hey..I can't feel my hands or my feet or my face...and..do I smell rotten eggs? (that smell is a seizure aura for me)
So then I started having a panic attack because I thought..oh my god..I'm going to fall and seize and nobody will know and I'll freeze to death.
So I got back in the house as fast as I could...and when I walked in the door I was like.."Mom. Seizure. Help."  So we started working to get as many layers off of me as we could so I didn't choke myself...and about a minute later, I had a seizure.
Wonderful.

Now I know it's my fault, I brought it on, I pushed myself beyond my limits...yadda yadda..
but..it just pisses me off because I hate that I HAVE limits. I HATE it. I hate my health. I hate epilepsy. I hate this Chronic migraine that won't go away.
OH
and by the way I've recently learned that I'm also anemic, which explains other things, too.
wonderful.

this cold weather just kills me physically.
it kills my head.

which is why i should live in a warm climate....
hmm. something to think about.

I've been thinking about a lot lately....I'm curious about a lot of things...have a lot I'd like to say...just not sure how or where to say them lol.

Well anyway that's all for now...Thankfully I'm still alive. and now I'm going to eat some Ramen and watch Family Guy and go to bed.
Goodnight.
<3

Oh by the way! I need book suggestions..I like pretty much everything so yeah...I need to read.
<3