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.