Friday, February 5, 2010

Well isn't that nice...

I think I finally crashed today. I cried harder than I have in a long time. I just feel like there's no fight left. I don't have the energy to fight it anymore. If this world wants to be rid of me so badly that it's gone out of its way to make my life hell than have at me. Take me.... I'm done!!!!
My boys don't deserve this and my husband deserves to be happy and not have to work his ass off to support us all the time.
I get it... This life wasn't meant for me. But it was meant for my boys and they deserve the best that this life has to offer. They don't deserve to lose their mom or their home or their lives because of this.
Right now we have hardly any food in the house. We are down to our last roll of toilet paper. Why am I such a failure? I tried to be a good person all the time. To donate when we could and sometimes when we couldn't. I smile and say hi to the lonely people walking by. I try to live my life with my mom in mind. What would she do? How would she handle things and what comes back to me is HOW?
How did she go through all that she went through and still manage to smile that infectious smile? How did she manage to get out of bed everyday and put on the courage mask? Where is that mask now? I need it.
The days ahead of us are pretty blurry now. I'm not quite sure what is going to happen. I pray we can stay in this house, our home. I pray that things turn around for us. I pray that my smile returns.

Thursday, February 4, 2010

Hello Again

I'm currently attending a Pain Management facility. It's supposed to help me manage my pain a little better or so I thought. They are talking about injection therapy at my scar sight and possible methadone treatment. I'm not to sure about either one of those choices. On a positive note my Blood Pressure is back down to 126/74....WHEW!
I know that I'm not as positive a person as I was going into this. I started out good and everything was going to be fine and I was going to take my life back with a didn't quite work out that way.
It seems as if I'm on a roller coaster that for the most part is constantly going up. I'm struggling in my seat just anticipating the plummet and it never comes. There's no even out or dips just the constant climb. I think if I can get past that and start the ride I can go back to a somewhat normal life.
I was asked to be a part of or linked to a Cancer site. I'm flattered but my condition isn't cancer. I don't know if the person knew that or not. I know the first thing people think of with this is cancer. TUMOR = CANCER that's the way I used to think as well. Neurofibromatosis a condition that causes neurological tumors to grow constantly. I am missing my chromosome 22 which would stop the growth of these benign tumors. Yeah for my genes!
I got my itinerary today for my next trip back east. I leave on April 18 with my husband and return home on April 23. I'm praying for no new growth and I'm praying for some answers. I am so greatful for the NINDS or the NIH. They have been wonderful to me. Free medical that doesn't take the "Person" out of the mix. They are kind and caring.
This is just a little update. I'm going to try to write more at a later date.

Saturday, January 30, 2010

When does it just stop and let me breath?

I've been having a lot of panic attacks lately. I know I'm under a tremendous amount of stress but, really, Panic Attacks???? Just one more thing. I'm not sure if this is going to subside but I sure hope it does.
I've been so irritable and moody. I just don't think that I have the strength to fight this much longer. I feel like, soon, I'll be in a straight jacket. Between the crying and stress and pain....
Don't get me wrong I will fight and carry on my family trait of strength. I will do my best to conquer this thing for my children. They deserve to have me in their lives.
My insurance company is declaring "Pre-existing" condition and refusing to pay the bills. What a load of crap. Like just what I need is more bills....just what we need.
How much needs to happen before we just give up.
My marriage is hanging on by a thread.... Who would expect a new marriage to survive this kind of diagnosis and all the new bills. I can see it on his face.... Stress....Tired.... How can I expect him to hang on when I don't even know the outcome. I love him so much but this is tearing at us bad.
I keep thinking there's something that I can do to fix our financial situation. Something I haven't thought of yet.... Everything just comes up blank....
I got the e-mail from the NIH. I will be going back again in April. This is both good and bad. I now need to do a fundraiser to get me there. We have no extra money and to add the expenses to that would just pull us further under. I can't not go... I need to go because they don't charge me and that's what I need.
I'm going to stop ranting and try to clean my house. I hope that helps my mood....

Wednesday, January 20, 2010

Off to the docs again.

I'm really ready for this to be done and over with. The only problem I have is if that day comes then my life would be over and I'm not ready for that. I'm ready for pain free days with no dizzy spells or seizures. I'm ready for the headaches to go away and to stop taking all those pills.
A co-worker of mine showed me this article about a boy in Idaho who has the same disorder that I have and he just got accepted by Social Security. What an amazing kid. Just turned 18 and was diagnosed with this at 4. This disorder took his Dads life. That scares the shit out of me.
Positives: I'm alive and thankful for that. I have a wonderful family and the best kids on the planet. I have so much more love in my heart these days. I can still dance...(at least in the comfort of my own home)
I'm trying to see the positive but it's hard when my "symptoms" pop up. Yesterday my head hurt. Today it's like my eyeballs are throbbing. So, try to picture for one moment what it would be like to see, drive, work with your eyes constantly throbbing on the outer vision. Needless to say, I find myself frustrated, depressed and just plain down. I want to be happy and I want to better myself for my kids. I want to lose 100 lbs and I want to live to see my great grand children. I want to be able to play with them as well.
You know, it seems as if I'm only on here for pity parties. My own personal hell, hidden behind a smile and released on this form of free therapy. Wow, I need to buck up and snap out of it.

Thursday, January 7, 2010

Still Pluggin' along

You know I didn't even realize that when I wrote those two posts that I was talking to God. I just started typing in the middle of a frustrated moment and didn't stop to read them until the end. It's funny how we stop and talk to him. It becomes second nature.
I went to get a sleep deprived EEG yesterday and had an appointment with my new Pain management doc. My blood pressure is dangerously high. I am in danger of having a stroke. What a blow to my ego. I have always teetered on the lower end of of the spectrum. I've even been told that it was too low at one point in time.
So, when does everything just kind of slow down? When is it OK to start looking forward to stuff again?
My whole life has revolved around one pattern. Whenever something good happens I can be guaranteed that something bad will come and take it's place. For example. We had a good family growing up, or so I thought, and then my dad left. Then my mom made our lives pretty fantastic growing up and then I decided to screw up that whole relationship to the point where we were barely talking. I fixed that relationship and it was wonderful and then she got sick and past away. I got married to a wonderful man and then I got this freaking brain tumor disorder.
As much as I think that I can keep trying to see the happiness in my life I am scared to admit there is any for fear of it being destroyed. How do I change this cycle? How do I make it OK to be happy again? How do I get to the point where I can start pointing out all of the wonderful things in my life without the fear that they will disappear.
This is my fear. If I give into what my heart wants me to then my heart will be crushed. How is this anyway to live. So now I need to chose the lesser of two evils. No matter what I chose I lose.
My boys can see it in my face. They can see that I've resorted to a blank feeling. I cry at the drop of a hat and I literally have to force myself to laugh or smile most days. This isn't fair for anyone, me included. This could all be avoided if I could just find one way to be able to enjoy the wonderful gifts in my life. I am scared that if I show any form of excitement it will all be taken away.
So, what do I do? Maybe this is why my blood pressure is so high.
Don't get me wrong on any of this. I love my family more than anything in this world. I want nothing more for them then happiness and good health. I want everything good for them.
I'm rambling...I just need to buck up and keep moving. I need to set my course and steer the path. I need to draw strength from my family and them from me. I need to stop whining all the time.

Wednesday, January 6, 2010

Lord, Are you there?

I'm so numb. It's like I'm in this bubble and everything is on the outside trying to puncture it. Stabbing at me with push pins. Poke Poke Poke!
I really need something to give. I know you're out there Lord. I know I can feel you and I'm just wondering WHY?
I know that without suffering there can be no compassion. How much compassion do you want me to have? Would you like me to lose my house and my kids? Would you like me to end up in a mental institute complete with straight jacket and padded walls? What do you want from me? Do you want me to suffer? How about my family do you want them to suffer? How about all the fear and unknown in our lives right now...... How much do you really think the boys can take before they crack..... How much do you expect Derek to be able to take before he finally says enough is enough? I need some answers God. I deserve some answers.
My brother had an MRI and it came back abnormal.... I thought that the deal I made with you was that this stops at me and I will try not to complain and even make jokes about it.....What happened to that? Why can't this just stop with me?
What is your plan for me and my family? Better yet... What is you plan for me? I am at the end of my rope Lord. I know you've seen me crying, I know you've seen me so scared I can't sleep. I know you can feel what I'm feeling so WHY??????
I don't want to lose my kids...our life...
I don't want to see my brother or anyone go through this....
I want to be able to work more and contribute more to our family...
I'm tired of pawning off everything we own just to cover bills...
I'm just Tired...
When is it our turn to take a break and relax....Not have to think about anything but fun and relaxing... I miss my smile... I really miss Derek's smile and what about my boys....
Seems they are only having fun and smiling outside of the home these days. I can see the worry and frustration in their eyes and they are just kids. They deserve to have fun and just be kids.
I want you to really listen to me, Lord. Please hear me... I'm tired. We need some peace. We need to see the light at the end of this tunnel. My boy deserve a better life than this. They deserve to not have to worry and to be happy. Derek deserves to live through at least one day where the bills aren't hounding at his every thought. I deserve to be able to not have to worry about everything all the time.
Please just hear my prayer.

Tuesday, January 5, 2010

Is there really a God?

You know unless suffering is a term of endearment than I don't believe it. Why must one person or one family suffer so much. Why did it have to be us and who in the hell decided that this was the type of life I wanted.
First you bless me with two beautiful children and then the fathers flake out. Then you bring back the relationship with my mom only to take her away from me. Then I meet this wonderful man and as newlyweds we get blessed with heart attacks and brain tumors...
Really fucking nice. For every good thing that has happened to me in this life something screwed up or just plain fucked up has to come and show it's face. Well, you know what???? I'm done being happy for the good things in my life. I'm done showing any kind of happiness because all you are going to do is stomp on it. Take the few seconds of joy and shatter them.
I'm tired.I'm drained. I'm done. I am having a really hard time trying to keep it together. If this is truly how life is supposed to be then Why? Why even try?
This family can't take much more. The abuse on our emotions needs to stop. This roller coaster is done and I want off.....
Out of all of this one thing is true. I love my family enough to try harder and fight harder but let me ask you this.... How much can one person take??? How much can one family take???? Don't my boys deserve better than this??? What did they do to deserve this????