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.

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 vengeance....it 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.

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....

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.

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.

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 home....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...
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.

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????

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.

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.....

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!

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....

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.

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.

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.

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....
THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART!!!!!!!
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!!!!!

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.....

Hi!

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.

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

WHY?

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.