Friday, June 28, 2013

Raw

Dear God,

I do not like complaining all the time; however, I also do not like feeling like my head is going to explode 24/7, or lying  awake in pain, or fantasizing about something as morbid as my own funeral, or gobbling pain medicine to get through a day (every day), or basically ANYTHING about my current living situation.

I have been at my job for 6 months, so naturally I have no vacation/sick time yet. I have just recently told people about the tumor because I don't want to scare folks off. The last thing I want is for my new employers to think (know?) they hired some sickly person that can't function. Each day, I muster up every ounce of strength that I have to get through my 8 hours. I have learned to function quite well with the pain. After all, I have been dealing with it now for going on 6 years. But it's the THINKING part that takes it's toll; forcing my mind to THINK beyond my throbbing head, or the feeling that my left eye is going to explode out of my eye socket, or the fogginess in my brain that makes it hard for me to recall things that I know, I know. But I'm managing. And I really try to stay positive and upbeat. But God, I'm just so discouraged. And I feel so alone.

I feel like a failure. As if this is somehow my fault and I should somehow just push through all this. When I'm home, I feel like the world's worst mother and wife. I am too exhausted and I hurt to much too want to do ANYTHING. I don't cook. I rarely eat dinner because I'm either drifting in/out of consciousness due to pain meds or I'm just hurting too bad to care about hunger. I don't go outside because the sun is too bright. I either wear sunglasses in the house or we keep all the lights off like vampires. I refuse to answer/talk on the phone because for some reason, that speaker on the phone has just always bothered my head worse. *sigh* I'm just LOADS of fun.

I feel like a failure at church. That is, when I can lift my head off of the couch to go. I constantly hear of how much You want to use me. How much You have in store. I feel as if that's a sick joke. I'd LOVE to do more. I'd love to be who I used to be, or MORE, but that's not who I am... And I guess that makes me feel angry with You. Because I'm in this desert all alone and You could pluck me out at anytime and yet still I just wander... And get taunted.

I feel like a failure at work. I'm a nurse, an RN, and sometimes I just feel totally stupid. That's probably not fair to blame on my head though. I just feel inadequate...

And God, as much as my family loves me, I can't talk to them. They just get upset that I'm upset. And then I'm sure they harbor their own anger. I mean, it's not like my husband signed on to marry "this" form of me. I can't talk to my friends because to many of them, headaches sound like... well, just headaches, that you can Tylenol for and then they go away. And talking to You is even a little hard right now because I'm upset with You. But I love You. And I need You. And at the end of the day, You are all I've got. I'm just finding it really hard to trust You...

So that's my prayer for today.

Wednesday, June 26, 2013

Confusion feels like a thick fog. I just need a flashlight!

Today my mom reminded me of the definition of insanity. I've been on the same two medicines (Topamax and Cymbalta) for my head for 3ish years, but yet I've had the same results. I still want to saw my head off. I've been hospitalized twice in the last 3 years for increased ICP. I'm still a hermit that lives in the dark in the quiet locked in my house missing out on LIFE.
 
My neurologist says that my headaches are not related to my brain tumor at all. He says that I have two different types of migraines. He says I have chronic and cluster migraines, both of which will subside with menopause, both of which are common with women of my age (early 30's). I have trouble believing/accepting this. Partly because I never, and I do mean NEVER, had a headache prior to my brain surgery. Secondly, because of the elevation of ICP. How is this explained??? His explanation is never really an explanation at all when I ask that. Back in September, my cerebral spinal fluid more than doubled what it should normally be and he did call what it "gathered in" a pseudo tumor. But that was it. Was that pseudo tumor in the empty hole left vacant by the removed tumor 5 1/2 years ago? He didn't seem to think so.
 
Now I know I might come off as annoyed with him, but I do have this need in me to 'people please', which is why I have never entertained the idea of a second opinion. But now hearing my kids say, "Is mom asleep AGAIN?" or not feeling good enough to do things that I really enjoy... Well, now I'm rethinking that second opinion. I'm sure too having a little bit of experience now as a nurse is causing me to rethink some things too... Maybe I'm just not quite as gullible or as trusting as I was a couple years ago.
 
And maybe I'm just exhausted. The thought that my current doctor is right and I have to live like this for another 20 + years... I just don't know if I can do that. It's so funny... I remember when people used to tell me "thank God that you lived... that you made it!" and I used to wonder. I want to live. But I want to REALLY live. I want to feel good and stay up till 10 on weeknights. I want to play with my kids outside not worried that the sun is too bright. I want to play video games with my son or card games with my daughter - able to tolerate noise and enjoy their laughter. I want to spend Saturday's cleaning house like normal mom's or shopping like other ladies. I want to pant, and do crafts like I so love. I want to ride my bike with my husband. I just want to feel good. That's all. I just want to feel good.

Sunday, June 23, 2013

Hi. I'm Jessica, and I'm a funeral-zilla.

It's been a couple of years since these thoughts have plagued me. I don't know if it's just because this has been a bad week and after a week of being in constant pain I'm left feeling discouraged, but last night those thoughts, or worries, resurfaced. I dreamt about my funeral. I WORRIED about my funeral.

Firstly, let me just confess something about myself. My husband and I didn't have a wedding. We married at the courthouse, and it was probably a good thing because I surely would have been a 'bridezilla'.  Here's how I know.  In nursing school, it was a tradition for the juniors to hold a Senior Tea at the last semester for the graduating class.  I was in charge of the theme/d├ęcor.  Since the Senior Tea was to take place in May, I settled on a Garden Party theme.  It wasn't long and I was dubbed, quite lovingly I'm sure, 'Teazilla'.  However, I am proud to say that the seniors and all of the nursing instructors said that it was the most beautiful Senior Tea that had ever been put on.

This is why my funeral stresses me out.  I do not want my family and friends to plan it.  I want to plan it because I want it to be done how I want it done.  Call me, 'Funeral-zilla'!  My first stressor was (is) the music. I remember thinking to myself how I HAD to get my husband a list of the songs that I wanted played at my funeral because this was just all wrong. The music he had played was beautiful, but just didn't come close to what I wanted.  Now I don't care the reason the music is played, like whether it's played during the seating of the guests or during the slideshow, etc., just so long as this is the music that is played.  There is a man in my church that I grew up with and I love like an Uncle.  I would love it if he played the first song on his guitar and sang it.  Then there is this beautiful lady in my church that is so full of grace.  She'd be perfect to sing the next two.  I don't care what happens with the forth song, as long as it's included. 
1. I Can Only Imagine
2. Oh What A Day That Will Be
3. Jesus, I Love Calling Your Name
4. There Will Be A Day

Secondly, I want there to be a slideshow.  Perhaps that sounds vain, but I want all my family and friends to know how special they are to me.  I guess you don't need a slideshow of pictures to tell you that, but I've been to enough funerals to know how much that means to the grieving family and friends to see themselves included in the service.  In order for this to be possible, I would need to start pulling out pictures now and setting them aside for my husband or whomever to compile a slideshow when that time comes.  In my dream there were so many pictures that were left out that I would have desperately wanted there...  Knowing that I can prevent that from happening makes me feel responsible.

Next was the flow of the service.  Everyone came dressed in black.  Everyone was sad.  Many were crying.  It was really very depressing.  I don't want it to be like that at all. We could do the slideshow early on, get the tears over with, then let the speaker speak something uplifting.  I do NOT want it to be one of those generic "see, never know when you could die, better get your life right" messages.  Instead, I want it to be a heartfelt, God inspired message.  I cannot say what it should be about as I really honestly want it to be something that comes from God. And someone needs to be sure to spread the word that no one can come dressed in black. No one. If they do, I will come back and haunt them.

As I want to be cremated, there will be no graveside needed.  Instead, I want for everyone to gather together to eat and tell stories all about me. :)  And there's my vanity for ya.  LOL  The stories can be embarrassing, funny, first time we met, etc.  Only rule is no sad stories allowed!  When people leave they are to feel full; spiritually, mentally, and physically.

I want the service to be at my long time church, the church that I've been raised in and I still attend.  I want my ashes spread out at Panama City Beach by my family because that place has so many happy memories for me with each of them. 

And that about sums up how I want my funeral.  I don't know if it will happen next year or in 10 years or in 50 years, but when the times comes, like a true funeral-zilla, I shall be ready.

Monday, June 17, 2013

Being angry with God

Growing up, there were two things that I always heard. 1. You never question God. 2. You are never, ever angry with God. After all, you are to have the fear of the Lord... and faith.  As I have gotten older, and lived many of life experiences, I have found that both of these things are complete bullocks.

I do think of myself as a woman of faith, and yet I have certainly questioned God.  After all, His ways are far beyond mine and I rarely understand them. Many of my examples in the Bible also questioned God at one time or another. Think of John the Baptist. While he was eating bugs and living as an outcast, Jesus was hanging out with all sorts of "lowly" types drinking wine and eating nice spreads of food. John questioned. (Matthew 11:2-3)

But then there is the issue with being angry with God. Now, I have all sorts of personal opinions about this. One would be that if we are to have a relationship with God, wouldn't anger only be a natural feeling to have at one time or another? I just think of anyone in my life that I am close to and I can certainly think of times that I have felt angry with them. I would think that the key would be to be angry and sin not. (Ephesians 4:26) But personal opinions aside, there are also Biblical examples of people that felt upset with God.

Let's look at Jeremiah.  This guy was called to be a prophet at a young age and for years and years and years he was extremely faithful. And yet, by worldly standards, his ministry was a failure. He prophesized for 40 or so years warning the children of Israel, hoping that they'd change their ways and turn back toward God, and seemingly his cries were scattered in the wind. The Israelites didn't change their ways in his lifetime... Jeremiah didn't lead them into a massive repentance. There were no fireworks during his ministry, in fact quite the opposite.  He was often thrown in prison, talked about, laughed at, etc.  And yet he kept warning and they kept living in their same ol' rut.

And throughout the book of Jeremiah, we can see his frustration with God. In Jeremiah 20:7, he literally tells God, "O Lord, thou hast deceived me, and I was deceived: thou art stronger than I, and hast prevailed; I am in derision daily, every one mocketh me."  All God had been telling him was that destruction was to come to the children of Israel and how they should change their ways, and yet poor ol' Jeremiah felt deceived by God. Jeremiah the prophet felt upset at God! Jeremiah didn't understand God.  If he could fell those emotions, then surely it's okay for me to feel the same way...

But there is something to say for Jeremiah. Actually, a couple of somethings.
1. He didn't pretend like everything was A-Okay.  He was hurt at God and confused and rather than try to bury the problem, he told God exactly how He was feeling.  It's not like God didn't know anyway. And what's amazing is that God didn't strike him dead!! God didn't get mad at him for feeling angry.
2.  Further in Jeremiah's prayer, he said, "I will not make mention of him, nor speak any more in his name. But his word was in mine heart as a burning fire shut up in my bones, and I was weary..." (Jeremiah 20:9)  He was tired. He was hurt. And he thought about giving up. He'd even said he was going to give up. But he just couldn't. And he didn't. Instead,  Jeremiah kept on keeping on.

There are probably all kinds of other lessons in this illustration, but these were the 2 that really spoke to me. It's okay if I feel angry. It's okay if I feel upset with God. But God wants me to TALK to Him about the bad times just like I do the good times. And even when I feel like throwing in the towel, I've got to just keep on keeping on. And in the meantime I can be grateful that I can cast ALL my cares on Him...

Saturday, June 15, 2013

angry rant

I hurt. head wants to explode. it's Saturday and my stupid head has stolen my day. i'm miserable. i'm mad. this is no quality of life. it just sucks. the end.