Sunday, November 8, 2009

Hello Again!!!!

Well, I haven't been on here in quite a while. My life has been busy so let me start from where I left off....
I started working. I got a job at a local "do it yourself" warehouse. I love my job but it's hard work. I'm on my feet a lot and my knees and ankles hurt. Originally I was hired for seasonal employment but they decided to keep me and now I am working on the pack down team. I love my job and my co-workers but this job is taking everything out of me.
I went back east again to see my doctors. I had my scans and they found no new growth and no new tumors. They said I'm doing really well and to keep in touch with them when I'm not there. I did e-mail him this weekend because of major head pain on the left side along with stars and dizziness.... One would think that I could just deal with all of this but it's really starting to get to me.
I get up everyday and make my coffee, eat breakfast, shower, go to work, and come home and crash. If I try to add any more into my day I'm toast. I try to add some exercising into my day and I feel as if it's sending me backwards. I'm just trying to live a normal life but it's really starting to wear on me.
This whole disorder doesn't just affect me. My kids are worried all the time. It's getting really hard to hide the way that I'm feeling with them. Derek's not sure what to do. He tries to be understanding and supportive but I know it's wearing on him too.
Medications...what can I say about them. If I want to feel better and pain free then I'm a zombie....If I want to be awake and alert I'm in pain.... How do I win with this one?
I know that I should just be thankful and move forward, but I have this constant reminder in the form of pain that keeps holding me back. I've gained sooooooooo much weight is sickens me and I do have to look at myself everyday for that constant reminder.
I know I've been complaining in this entry but it's where I've been. I'm going to try each day to move a bit further ahead of this. Continue to smile and joke about this and love my family more everyday. I do have a lot to live for and that's what keeps me going.
The boys are doing great...and so is Derek. It's like we got on this roller coaster that won't stop climbing. Seems like we are stuck going up against a brick wall. Occasionally we hit the dip.....OK we hit the dip a lot but that brick wall keeps getting harder and harder to pass.
I do have to say that I am one of the lucky ones. I've only had one surgery and, although I complain a lot, my symptoms aren't as bad as others I know. I am blessed for that. I pray everyday for my friends who are going through this everyday. God dealt us this hand and it is he who will guide us through.

Friday, April 24, 2009

I have a phone interview today...

That's right!!!! I'm trying to go back to work. I'm nervous but happy. I hope my kids can handle being on their own. I really hope that we can get out of debt with this.
I have high hopes for the future as we all do. This summer I want to go on camping trip with my family and trips to the beach. We live so close yet so far away.
Wish me luck...I have a couple of other ventures that I'm trying to work out. I really do like being home but I need to get out into the world as well. I am hoping that this will help my mood.
I pray that I don't get headaches and such. I'm praying that this is something that I can do. I would really like to get into a company that understands the fact that I have to go to Maryland Twice a year and that I could be having surgery soon.
Keep your fingers crossed.....

Wednesday, April 22, 2009

Happy Birthday to me!!!!

Today is my birthday. It's not a big deal except it's another notch on my list. The list of things I want to do before I die. Before I went into Brain surgery I had this list of things to look forward to and my birthday was one of them. Other things have been checked off that list as well (Christmas, Matt's birthday..etc).
Derek forgot it. My boys remembered though and so did numerous other people. I was sung to a lot and it was great.
My birthday to me represents the fact that I did it. I'm doing it!. I can beat this thing one birthday at a time. One milestone at a time. Take everything as it comes because tomorrow is just another step.
Things may not be perfect in my life but I do have wonderful people in it. I wouldn't trade them for anything. I love them so much.
Everyday is a new stepping stone....a different beginning...My life!

Tuesday, April 21, 2009

OK.... Time to act like an adult again.

I vented yesterday and I guess I deserved it. I'm so tired of all of the bills and the fact that the government isn't helping the "little people". I've written a couple of letters to Obama and haven't even recieved an automated response. Boy did we chose the wrong president. I guess I can't complain too much. The government is funding the clinical study that I'm a part of. In fact if it doesn't get cut then they will do my next surgery.
I'm just so frustrated that my husband is working so hard and he has no money coming in. We had to "rob Peter to pay Paul" yesterday and I'm not sure its going to work because people are stealing my money. We are overdrawn and over-extended. I feel as if the Devil is using us as his personal pawn in life. He's not allowed but it sure feels like it. God can bring you to it and bring you through it but what about the things that God doesn't bring you to? I don't think that he would put this much on one person.
I feel as if I'm being tested to see how much I can take before I crack.
I tell you right now..... I'm past cracking... I'm done... If this is what God was waiting for then I'm here I'm cracking and it's time for him to carry me.

I have an Orientation tomorrow at the Employment department and I'm hoping they give me some help on re-training or schooling. We need the help and I need to find a new career.

I'm done venting. I do feel, that SSDI should have approved me but since they didn't what am I gonna do...lay down and Die!!!!! Not a chance....

Monday, April 20, 2009

Why does it have to be this hard?????

OK so we are trying to get caught up and money is just not meeting what we need it to. So, today in the mail shut off notices. I'm so sick of this. I'm trying but I can't fix this and I can't fix myself. Why does it have to be this hard?
I'm so tired of all the crap....Life sucks !

New Update!!!

Wednesday is my birthday Woopidy do!!!! I'm not excited because nothings going to happen. No cards, presents, cake..... My hubbies out of town. I sound pathetic don't I. It's not about all the gifts and stuff. I'm down because who is here to acknowledge it? Last year was the first time since my mom was alive that I had a birthday cake...Thanks to Derek and his Mom. It was wonderful. I liked it so much. I miss my mom. She always made our birthdays all about us. It felt good to have cake with the family and even blow out the candles....
Oh well, Life goes on.
I have an all day seminar on that day. So I will be busy. Hopefully they can help me re-train for another job, maybe in healthcare.
I'm back on anti-seizure meds. This is a good thing but now I'm having trouble completing thoughts and sentences. If this post sounds random and mixed up that's why...
The sun has been out now for three days. Saturday we went to the fountains and the kids ran through. Sunday we pulled weeds and grass and had a water fight. I love acting like a kid....
All in all things are OK...Just trying to find a way to pay the bills and keep up with day to day life.

Thursday, April 9, 2009

Back in the Hospital....YUCK!

It was a great day here at the "White House" and we were all outside enjoying the weather. I was sitting on our bench and then it hit. I was seeing stars and then the double vision hit. I just felt weird. All I remember was my husband telling me to go lay down and nothing else. I made it to the couch, mumbling crazy incoherent (sp) things and don't even remember it. Derek was asking me some questions and I wasn't responding. The lights were on and no one was home. I just don't get it.....
He rushed me the the ER and low and behold I had another seizure.... My head was pounding so bad that I felt like my right eye was being squeezed with someones fist. They gave me a CT scan and called in my scans from Maryland. They also gave me Dillated and Benedryll and Zophran.
Well, I was released...(big surprise) and told to call my NS and see a PC....Hard to do with no insurance.... I am going to go to the County Health Department today to see about getting on the meds. I'm still waiting for the state to call me back and tell me if I can get approved on medical.
I know why this happened and I know that I am supposed to be on meds. I need to try to stay calm in the event of undo stress. Everytime I stress out I have one. It's horrible, but with all of the new stress it was bound to happen.

I think it's time that we all write e-mails to the President again. I'm so sick of scraping by and wondering why. We all need medical insurance and if we can't afford it this is supposed to be there for us. Why is it that our tax money and the relief money isn't going where it should. This country is falling apart and fast. Businesses going under and more people are homeless....Oregon has one of the Highest unemployment rates and they give us money to build a new bridge....claiming that it will create job...Big clue!!!!! Not all of us can do construction... What a joke. They also gave Oregon money to Dredge the Columbia river.... That isn't going to give me a chance at a job either. What a joke....
They say that for every job opening there are at least 100-200 applicants. College graduates are working at Mc Donalds. Why don't we worry less about what's going on in other countries and try to take care of our own.
Sorry to vent, I just hate the way the government is spending the "relief" money....

I'm doing OK now. I was in bed all day yesterday and still have a little headache today. Such is the life of a brain tumor patient.

Saturday, March 28, 2009

Spring weather and a new Spirit!

For the last two days we have had 55 degree weather and no rain. I took full advantage of this and mowed the lawn, weeded and trimmed back the hedges. I am absolutely bushed.
I'm happy to report that my Hydrangeas made it...all three (my favorites next to lilacs). Someday I will have a whole mess of lilac trees in my yard. This is my dream.
My trees are blooming and most of my grass survived. I was worried because our winter was so bad. We haven't seen a winter like this in 60 years. When I wonder through the neighborhood I see people pulling all kinds of dead plants out of their yards. I thought for sure my plants were toast. Even my Baby Japanese Maple survived.
Spring is in the air and the flowers are blooming. It is bringing new life to the "White House"...Even my boys jumped in for some good hard work.
I saw a movie and there was a quote in it I really liked.
What sound does a blooming flower make? It doesn't need to make a sound to know it's pretty, it just is.
Of coarse it was in one of my kids' movies but I still liked it.
There's something to be said about giving energy both negative and positive to things. I've given these tumors so much negative energy that I think now is the time to start with some positive. I'm going to try to embrace the Spring and Summer weather with a new positive attitude about everything.

Thursday, March 26, 2009

Maryland Trip

First I have to say a great big THANK YOU to my sister in law Laura for putting up with me and helping me to be not so confused and to find my way. Also, Thank you for helping me step outside of my box...I love you!!!!
I also want to thank everyone who helped get us over there. I couldn't have done it without you and when you read on you will see just how important this trip really was so....
We flew in so late on Sunday and our cab ride from the airport was almost $100.00....HOLY CRUD!!! We almost passed out..... We got to the hotel only to find out that no one over there believes in French Vanilla Coffee Creamer....hmmmm right there we should have turned and run but we didn't. We stuck it out.....
The first day was a killer. I had to check in with admissions at 7 and off to testing after.
Blood work
MRI's...3 then
Clinic....done by 5pm...YUK!!!!
Day two....
Hearing and balance....woo hoo kind of fun....7 hours
Day three....ENT... Eye doc and then my eyes were dialated...double YUK!!! 7hours
Day four....Time to go home but not before nurses clinic... and I got to see my New Neuroseurgeon Dr. Ashtegari...

What we found:
A new cyst in my sinuses small but we will monitor.
A new tumor in my left auditory canal small and we will monitor
Two new tumors in my spine, again small and monitoring.

They accepted me into this clinical study. What this means for me is that they are taking on all of my medical bills. testing, surgeries and travel expenses for this. They are the best of the best when it comes to my disorder and I am in good hands.

A new worry. I found out that I am a spontaneous case. I developed this in my mommys tummy when the cells split about the 4th time which means that my children have either a 1 in 2 chance of getting this or a 1 in 4 chance. Scary but at least I have done my research and I know who to call and where to go. I can monitor them and watch for the signs. They will be accepted into the NIH on the same deal as me if they have this too. That made me feel better.

All in all this was a good informative trip. I feel good about going and I know that this is the right place for me to be with my disorder. They really know their stuff.

Thanks again to everyong for all of your nice thoughts and prayers and all of your help with the fundraiser. I really appreciate it. YOU ALL ROCK!!!!!

Friday, March 6, 2009

What a week....

At the beginning of the week Derek's Great Grandma Mimi passed away. She didn't like being called grandma but she was one incredible lady. The last time I was able to spend time with her was when we were getting ready for Mom's wedding and we were making the party favors. It was an assembly line. She filled I wrapped and Dottie tied. I had so much fun. She was an incredible woman and I'm just sorry that I didn't get the chance to have lunch with her where she lived. Derek and I told her we would and we didn't. We just live too far away or weren't down there long enough to be able to visit. And then you have the whole rule "no semi-trucks allowed" I could go on but I dig into the real reason at the end of my blog.
At 1:45am I got a phone call from Derek and he told me that Grandma Juanita passed away. She was the type of woman who always looked fabulous. She would grab your hand when talking to you and you never saw her without her lipstick. Her smile went for miles and you could feel it before you even walked into the room. She let me into her heart and into her family. She is the one who gave permission for Derek and I to get married. She would tell me stories of all her husbands and how she missed all of them. She would point to pictures on the wall and tell me who they were. She has family pictures all over her walls.

This week is a rough one to say the least. I can't imagine what Derek's Mom, Grandma Dottie, sister and Tom are going through right now. I was only graced with knowing them for such a short period of time and I feel like such a great loss has hit our house, and it has. They've known them their whole lives and to not have them anymore is the same as not having my mom.

I think that our society moves too fast and doesn't take time to stop and make time for family. Life isn't always easy. It's not handed to us and we can't always expect things to be a cake walk. We need to work for what we want and we also need to stop and smell the roses. We need to spend quality time with loved ones and enjoy what God has given us. We are not going to be around forever. We need to make the most of the time we have today.

Stop running the "Rat Race"! Stop Chasing your tail. Start walking and skip once in a while. Give an extra hug, just because. Call a friend or loved one just to say Hi! Not just on the holidays.... Make time for them and in the long run you are making time for yourself. Only then are you truly living.....

Wednesday, February 25, 2009


Today I have a meeting with my Guys! If I refer to them as that then I'm not so nervous. I still have to get Timmy ready and Matthew is still sick. I'm still not sleeping. I'm really not sure how I'm surviving on 2-4 hours of sleep a night. How does anyone survive on this. Sleeping medications don't work. Did they take a chunk of brain out of my head that allows me to sleep. I don't know.
I have been running over so much in my head lately. I don't even know where to begin. You know I write on here because I feel like it's my outlet. I have to let it out somewhere. I am losing my medical but I am trying to get on OHP. Pray for that. I am trying to act as normal as possible so that I am no longer an embarrassment. I'm trying to return to the work force to get some money into the house. I'm feeling like a failure but at the same time I'm taking so many pills for pain for my headaches that I'm sure to have an ulcer soon. On a lighter note, I have everyone believing I'm normal again. I guess if this is all it takes than that's what I have to do. It was too much for them to take that something was actually wrong with me. Never mind the fact that I forget things I blank out. I'm getting pretty good at playing it off.
All I need to do is work my ass off and save as much as I can for my boys. As long as I know that they are taken care of I will be fine. That is my only goal. Everything else is secondary. Everything can wait.
So, I promised someone pretty cool that reads this that I would post pictures of my boys receiving their models. Here they are.

Saturday, February 14, 2009

My fundraiser

Below is a letter that I sent to people in my address book. I now am feeling guilty for sending it. Not because I don't think they won't want to help but because I'm so tired of being everyone's charity case. All I want is to be back to normal. I'm just Tired and I think this is the last of my fight. I'm going to my Last doctors appointment on Monday and I'm going to ask him to wean me off of my meds. I can't afford them anymore. My husband has taken on this role of taking care of everything and now I can't bring myself to tell him that I think something is wrong. Either I have my meds all screwed up or I have tumors growing. What else could be causing all of this pain. I'm just so tired. I'm losing my fight and it just seems like I should be putting my energy into my children and my husband. I would rather be spending time with them and knowing that I'm enjoying them. I don't want to continue to leave them with a bunch of unpaid medical bills. I'm just TIRED. Here's the letter. You tell me what you think. Maybe I should apologize and send out a retraction e-mail.

As all of you know I am battling a benign condition called Neurofibromatosis Type two. What this means is that I don't have my chromosome 22 which will disable tumor growth on my spine and in my brain. This has caused numerous tumors called meningiomas to grow on and in my brain.
I had surgery on August 25 to remove 5 tumors and they were only able to remove 4 fully. The 5th one was a bugger and was attached to a major vein in my brain and it started to bleed. My Neurosurgeon was able to remove 90% of that one. This surgery has left me with some deficits but I am alive. I continue to live my life the best that I can.
This past year has left my family in a financial hardship to say the least. I have been unable to work and my husband has had to pick up the slack. We are trying to survive on one income and it's so overwhelming. The medical bills keep piling in and are totaling over $150,000.00 as of right now. Needless to say my health has to be put on hold so that we can try to catch up.
You are probably wondering why I am needing a fundraiser. No, it's not for our bills. We are working on that. I have the opportunity to fly to Bethesda Maryland to the National Institute of Neurological Disorders and Stroke. They are paying for my plane fare and reimbursing me for most of my hotel stay. I need help coming up with the money up front. This trip is going to cost me about 1200.00 out of pocket before I get reimbursed.
There are benefits to going to this clinic. I will get two FREE MRI's, Vision and Hearing Testing, Gate and Balance Testing and Vestibular Testing. This may not sound like a lot to you but it means a savings of about 10 - 15 thousand dollars to my family. It also will put me in line to have my next surgery at their hospital at their cost. My insurance isn't good. This is the only way I can see us continuing the fight of this disorder. I myself am running out of fight. This is my chance to give this disorder a swift kick in the butt.

I appreciate any ideas and any help you can give,
Thank you,
Kelly White and Family

Thursday, February 12, 2009


I'm just sick to my stomach, my head hurts and I can't even fathom the thought that no one will listen to me. I have been writing letters to the President, Governor, Senator, Congresman, etc.... The only response I got was some stupid generic auto reply saying that if my inquiry required a response they would get back to me. Really???? Guess What? Not one person replied. Not the news, the president, Governor, etc.... I'm done. I've lost my faith in a system that is supposed to be there for us the people. In the Declaration of Independence it states "We the People" Whatever. Where do we fit into that mix? You only count if you have money or you are part of "Big Oil" Someone like me is better off gone in their eyes. It just makes me sick to my stomach.
I'm trying to raise money for my trip back east and I'm trying to find out why my head is non-stop hurting. I want my life back. I want to be me again. I don't know how many people out there can handle pain in their head everyday like this. I see spots I'm dizzy I just want it to go away. I want it to stop. The worst part is that the more it hurts the more pain killers I take. I wait until the last possible moment but I feel like I'm living on them. How is that right? I hate being drugged up all the time but I hate that my head hurts so much. The more this vicious cycle happens the more the depression sets in. Wow!!! I wish they never diagnosed me. I wish I never went to the doctors. I wish I just lived my life fully until one day when BAM that was it. I wouldn't even have known what hit me.
I'm tired of this and I'm thinking that either I have tumors growing or that my meds are all screwed up. Something is causing my head to hurt and all of the other symptoms to increase. Something has changed. I need to figure all of this out.
I just needed to vent. I'm so tired. I only get about two hours of sleep a night and my head has been hurting 24/7. I look like I've been hit by a MAC truck. I'm just so tired. I just want it all to go away. I want my mom to hug me and hold me and tell me everything is going to be OK. I need her right now.

Monday, February 9, 2009

Migraines and Some Light at the end of the Tunnel

Well, I'm battling migraines, insomnia, memory issues...etc...but I guess that's what they give you drugs for. I mean I have the ability to try out all of the latest greatest pain killers and migraine medications that I want. The downfall to this is the fact that I hate taking pills. I don't want to become addicted and I sure as hell don't want to become dependent on something just to make it through the days.
So, you are probably wondering what the light is at the end of the tunnel. Well, today I took my klutz of a husband (you know I love him) to the doctors with a sprained ankle. We see the same doctor who I absolutely love. He's a no nonsense kind of doc who doesn't just prescribe pills to get you out of the office or make his quota. He really cares about you. He asked about my brother and me. We made fun of Derek together...LOL
Now, my appointment isn't until next week but he was asking me how my headaches were doing. I told them they sucked and then he asked me how my memory was doing and I said the same thing but I would talk to him next week. He said good and don't miss the appointment because he has some ideas for me. HOLY CRAP!!!!! Someone has a clue....
All I wanted all a long was some validation for this or some help or pain management and now maybe I'll actually get some help. I'm excited. Even if I was able to manage the pain and get back some of my memory or at least learn to regain or maintain it I would be happy. I just couldn't imagine not having him as my doctor.

All in all, if Derek didn't twist the crap out of his ankle then I wouldn't feel so good about my up-coming appointment. I usually dread the next visit bearing the same news:
The tumors are still there. You just have to live with this. There's nothing I can do for this. I know this sucks but.... We can TRY to up this medication or add this medication.
It does get tiring trying to live a normal life after brain surgery. At first I felt like a million bucks. I was starving. I couldn't stop eating. The deficit I had was on the left side and my leg dragged and was weak. As time went on I started feeling like I was violated. Like I wasn't me anymore. I would wake up and the scar is there and I would cry all the time.
I try to walk and I fall. I try to talk and I stutter. I have Extreme Fatigue and Blank Spots and Seizures and major weight gain.....All of this means nothing compared to the fact that I'm alive. I fight these feelings everyday because I am alive. I want to go back to work. I want to be normal and I want to be the best that I can be.
I want to play basketball with the boys and go hiking. I want to go walking without falling or dragging my leg. I do have a lot of wants but most of all I want to live. I will live and fight this thing to see my boys grow.

Next month I go to Maryland to the NINDS. I cant wait. The doctors there will be able to find out so much about Neurofibromatosis Type Two. They will be able to find the answers to help my children and their children. I also get all kinds of free testing out of it. That right there is going to save me over 10,000.00. All I need to come up with is 900.00 that is paid back to me before I leave them. Pretty cool.

Friday, February 6, 2009

Boys and their Toys

A very good friend of ours treated my boys to some good ol' fashioned fun. They started and now they haven't been able to stop. Well, the smaller boys, Matt and Tim have been able to walk away but Derek is hooked. Just check out the pics below and you will see what was happening after the kids went to bed last night. Now, my camera is in the truck still so I had to take these pics with my phone.
This post is just for fun....

Thursday, February 5, 2009

Road Trip....

I promise I will have more pictures soon....
I had a blast we started off to Pullman Washington and it was a mess. We woke up to Snow. Yep more snow in Oregon. We jumped in the truck and headed out anyway. My husband is such the trooper. I, being the co-pilot, was really just along for the ride.
We got out of town and onto i-84. By this time it was snowing even worse and we were getting worried. We fueled up in Troutdale and I got coffee and again we were off. No rest for the weary, especially when the snow is falling and it's 29 degrees outside.
We did good on I-84 until Boneville Hill where people were losing the ability to think rationally. I mean when you have a layer of ice and then 2-3 inches of snow do you really think it's a good idea to pass trucks going 60??? And, to pass those same trucks who have their hazards on because of vehicles in the ditch ahead. I couldn't understand it but their were angels on I-84 that day.
We came around a corner and in the blink of an eye the truck in front of us started to lose it and slide sideways in the tunnel. The 4-wheeler (regular car) in between us was losing it and then their was us.
My husband just calm cool and collect talked me through the whole thing. He used his Jake brakes and straightened out and and saved us and the car in front of us. He is a professional driver. He amazed me with the way he maneuvered this huge piece of machinery like it was a feather and made sure we were all safe and made sure my mind was at ease. My hero. Such a Cliche, but true.

So, then it was the hill after the tunnel. Yep you guessed it, we didn't make it. But this didn't stop us either. Derek jumps out and throws chains. That's the picture you see above. Just look at all of the trucks. We completely shut down the eastbound side for about an hour for this. I did take pictures of a State trooper giving a ticket to a driver who was refusing to put chains on. That is one big no no. I really think that he just didn't have any of them to begin with. He was in a Big Rig and was trying to weave in and out of all of the trucks and didn't make it. I think he might of had chains on at one point in time but put them on wrong and they fell off.

I will write more tomorrow and add more pictures. I have pictures of Colfax Washington (below) which makes me think of Mayberry and Andy,Opie, and Aunt Bee. I can just imagine sitting in front of a General store drinking an ice cold Cherry Coke and gabbing with the ladies....Good times. Just a thought to leave you all with.

Friday, January 23, 2009

Live, Love, Laugh, & Learn

Words to live by.
- We cannot put off living until we are ready. The most salient characteristic of life is its urgency, "here and now" without any possible postponement. Life is fired at us point-blank. -Jose Ortega y Gasset

Just a quote I ran across. WOW! I kept reading it and reading it. It's true. Why put it off. Why wait. Life is fired at you. It's a gun pointed at your head and the trigger is pulled. BAM!!!! you're a Mom! BAM! you have Brain Tumors....See where I'm going with this....
Now, some of you out there plan every aspect of your life... 0r so you think. I didn't plan my children. I didn't plan for my mom to get sick. I didn't plan for life to go the way it did. I didn't plan to meet the man of my dreams after I had my children. I didn't plan on getting brain tumors.
We as a whole don't plan on getting into a car accident or sending our sons and daughters off to war. What we can control are our smiles, our love, our inner happiness and our joy.
No one can take away the peace that I feel when I tuck my children into bed every night. No one can take away the love I feel everyday when I wake them up and kiss them good morning. No one can take away the love that my husband and I share or the magic of the birth of my new great nephew Gavin.
Life is short and and we need to not miss out on the little moments that can make us so happy.
-The tragedy of life is not so much what we suffer, but rather what we miss. - Thomas Carlyle

Wednesday, January 14, 2009

Crazy People make me happy

I see them on the news all the time making weird comments and funny gestures and I just love it. I laugh and laugh and it just makes me feel good. Not because I think that I am better than they are or anything like that. And, don't get me wrong here, I'm not laughing at them, I'm laughing with them.
Have you ever taken the time to check out the person walking down the street talking to themselves and just listened in? Take a moment before you judge. They are having in depth conversations with someone who gives a damn and listens to them without judging them. Most of us do it everyday in silence in our prayers talking to God. They don't care what you or I think of them. They lost that a long time ago. Life threw them a curve ball and they are rolling with it. They do seem happy. Smiles on there faces, bouncing around like children, talking to people only they can see. And they are happy.
Most adults lost the ability to be truly happy when they were children. We lose that ability to find a toy out of a stick and a game out of two shoes and three friends. We no longer roll down the hills, or laugh because snot bubbles came out of our best friends nose. Most of us have one best friend not 10. We would rather go to a bar than play legos or watch TV than go to the park. We are afraid of the neighbors dog, we don't want to pet it.
I just feel like society is needing an overhaul. We used to know all of our neighbors. We used to know their kids. Our parents had block parties and Tupperware parties and BBQ's. If I sneezed wrong three blocks over my mom knew about it because she got a phone call from Mrs. Smith.
We need to pick one fun memory everyday and just let it stick out in our heads. Live it and tell our children about it. Sledding, basketball, bike rides, Soggy and Boppa's house with chocolate chip cookies. You name it we need to pass this on. Our kids know video games and TV, cartoons and electronics.
This country has devoted a whole trade show to the electronic gaming industry. New and improved ways to kill brain cells in your children. New ways to keep your kids inside and help them to gain weight. We have TV shows that are dedicated to weight loss and clinics dedicated to the obese.
I'm not sure what brought this up other than the fact that I had a lot on my mind. I've been upset because every time I try to work out I end up with a headache. I'm trying to lose some of the weight and gain some strength and it puts me in bed for the rest of the day. Not to sleep because I'm dealing with insomnia again. I'm done with my head hurting. I just want to get out and play with my boys again. I want to run and jump and play basketball with them. I want to laugh till my sides hurt and I have tears coming out of my eyes. I don't want to do this and end up with a headache. I also feel like I'm not teaching my children any kind of lesson by being in the house all of the time. I'm not sure how much longer they are going to let me drive and that just makes it worse.
Chin up and moving forward I just need to re-define my terms........

So, back to the beginning of my post "Crazy people make me happy", what's the difference between them walking down the street talking out loud and me voicing it on here? Am I crazy too? Are all of the other bloggers crazy too? Or, are we just closet crazy people.....LOL

Tuesday, January 6, 2009

A happy pill and a cuddles from my hubby

Good medicine when you're feeling blue. He really does take care of me when my head starts to explode. We were laughing a little earlier. You see we have really good insurance so if a tree were to fall on our house we could collect the insurance money and start over....hmmmmmm maybe someplace warm.....
Wishful thinking.
I watch those shows House hunters International. I love it when they go to tropical places and get beautiful homes for next to nothing. I mean I'm in. I would love to spend the rest of my days lounging on a beach with my only worry being "should I have a Mai Tai or a Margarita?" "Lounge chair or beach towel?"
We could go to a tropical place that loves Americans...(not many left) and I could raise my boys there. Derek and I could sell arts and crafts to the tourists and spend our days loving life.....hmmmmmmmm living a pipe dream....LOL
I'm definitely on my happy pills. You see, when you have brain tumors...You get to tell the doctors what you want. You don't have to wait for them to prescribe it to you. I want to try this one this time doc....OK.....
It's not really all like that but it sure feels like that sometimes. For the money that we pay out in prescriptions I should own the companies.
I do have to say that through all of this and every up and down Derek and I are still here. He married a Hottie with two kids and ended up with me, some brain tumors, and some funny deficits, and he's still here. Gotta love him.
We're going to be OK.
HAPPY PILLS AWAY!!!!!!!! Tomorrow's a new day

So Now What?????

The doctors are upset to say the least but ultimately are leaving it up to me. It is my body and my choice whether I go back to work or not. I can try. I have to do something. I can't have people feeling bad because they are unable to help us right now. It's not there job to help us. We are truly thankful for all the help we have received throughout this time, but now it's time to step up and make it happen. It's time for me to ease others burdens.
I figure between my two boys, my brother Kevin's 4 kids and Scot's two kids, one of them is going to become the doctor who finds the cure for this disorder. Then I will know that all of the kids will be safe.
I am off to the Vocational Rehabilitation Office to see if I will be able to work and then it's off to the work force. We'll see what happens...Wish me luck.....

Sunday, January 4, 2009

I just don't know anymore

I'm losing faith in my government in the system in its people. I'm losing faith in the people who think that a computer is always right, yet we pay people billions of dollars every year to fix and upgrade them. I am losing faith in our future and what I have to send my children into when for all I know the only good people out there are my immediate friends.
That can't be so. This can't be the way that God intended it. Good hard working people didn't intend for us to go under but the government, who we have paid into for years does. They are willing to turn their heads and cough and forget about it. They do not care about us or how we are coming to survive through this. They only see me as a number. I am one in a billion of people who have applied for SSDI this year. I am just a number and one with an unrecognizable disorder that has already kicked my case out of the system once so they have started my case over. My new decision date is April 29. It was originally January 29.
Now, I have no choice. I am going to lie to a prospective employer. I am going to apply for a job and not tell them about my disorder. I am going to work full time and go for medical benefits and hope that nothing happens in the process. I don't know how we are going to make it anymore without me working. I'm tired of being a strain on others and I can't keep taking help from others when they have their own mouths to feed. I am not ungrateful by any means. It's exactly the opposite. I couldn't be more grateful. We couldn't have made it without them.
A very nice lady is bringing me a treadmill today to borrow. I posted an add on Craigslist to trade a Printer for a used treadmill and she offered to loan me one. I told her that I couldn't believe her generosity and I was very thankful. She sounds like an older woman. She has a daughter who lives across the way and I told her that Derek is home to help unload.
My goal:
Lose 50lbs
Get Strong again
Get memory back
Get coordination back
Get back to work
Get my independence back

It's time. I can't keep waiting on something that's never going to happen. I can't wait for the government to determine that "oh yeah she does have inoperable tumors" "oh yeah she doesn't have a short term memory or balance"
It sucks that so many people have frauded them each year to make it get to this point. If they would just look at my doctors notes they would see that I have multiple brain tumors..... Neurofibromatosis Type II and had major brain surgery. Maybe they would see the doctors notes that I do have deficits. I don't know maybe this is how they save money. Just put people off until they just can't take it anymore.
I'm going to be ok. I will be fine. We are going to do what we have to do to survive and make it happen.....