Monday, November 24, 2008


I sit here all day and all night and do a whole lot of nothing. I wish I could work. I feel like a freeloader. I am 33 years old and the littlest bit of stress and I freak out. I get a headache and I'm back in my depression. WHY????
I used to thrive on stress. I used to thrive on multi-tasking. I used to love being so busy that my head was spinning. Now I can barely handle one task. My brother thinks that if I just get back out there and go back to work I'll be fine. I'm scared because what happens if I freak out at work? I wish I could see a counselor. I try to talk to Derek about this but he has so much on his plate right now. He even told me yesterday that he isn't going to be home for Christmas. So, now I single handily ruined Christmas. What did I do that was so terrible to deserve this. All I ever wanted was Love and Family. I already lost my mom, had brain surgery, am losing my family slowly. I'm so scared.
I'm supposed to be the strong one. I'm supposed to be the one with all of the answers. I'm the one that is supposed to work their fingers to the bone for her family. This can't go on like this forever. I need to have some answers. I have an appointment on December 1st with my PCP and then on December 16th with my NS. I hope and pray that someone has an answer as to why my brain is working like this.
I am going to the NINDS in January or February for that study. I'm going to ask them tons of questions. I feel like they probably know more about this disease than I could ever know. It's one of the main reasons I want to go. I also want to know why my vision is blurring. I just want answers.
My head hurts, a dull ache. I'm not sure why but the ringing is getting louder and it's almost as if someone is trying really hard to tell me something. I hope it's something good.
Today I'm thankful for my family, my boys, my life and all the love in my heart. I'm thankful to be alive. I'm thankful for hope and healing. I'm thankful for good friends. I'm thankful for the roof over my head and the warmth of our home. I am thankful for my life.

Thursday, November 20, 2008

Call To Action

I just wanted a title that would make everyone want to read this....Just kidding. I think that everyone should want to read this because it's about me.... again just kidding!
I'm dealing with kids who's parents obviously don't care enough to teach them right from wrong and they want to hurt my boys. I'm dealing with schools who don't care enough to boot the kids out of there and hold those parents and children responsible. They will. I will make sure of it.
I'm doing OK this week. I'm trying to re-learn how to deal with stress so that it doesn't put me into bed for the day. I don't know why but I get flustered and my head pounds and I cry and shake. It's a horrible feeling. I am getting better but I really need to learn how to deal with this.
I had another bout of extreme fatigue this week. I hate it because it feels like I am outside of my body looking in. Like I have no control. Thank God this one didn't last that long.

OK everyone... The real reason for this blog...Time to rock the boat. I applied for SSDI on September 9th. They say that I won't hear anything until January 29th. If I don't hear anything by then I can contest and file a claim with them. In the mean time we are struggling. I am happy to be alive, don't get me wrong. I'm just upset with our system. I can understand that they want to keep the riff raff out but come on. I had Brain surgery to remove 4 brain tumors and I still have 15-20 left in my head. I have 3 doctors saying that I am disabled and shouldn't be working. They still don't want to give me an answer or call me back.
I need everyone to write a letter to your congressman or to the White House. Together we can move mountains, together we can fix a broken system. We need to fix this one. This system can't expect us to live on no money when we can't work. Why do we pay into a system that we can't use. It's almost like they want us to go homeless or die so they don't have to pay us. We need to work as a team to fix this. I don't want to lose my home or my family because of a disease that I didn't chose to have. I don't want to see anyone else go through this as well. And why should I have to depend on others to help me out all the time when I did pay into this system?
I am thankful for my friends and family for helping my family out in our time of need and we will pay it forward someday. We have been blessed by some wonderful guardian angels who stepped forward without question and kept our heads above water. We have so much to be thankful for this year.
I may complain a lot about this and the way things are going but I am still here and I am alive. I am truly thankful for the gifts in my life my friends and family. I'm thankful for my on-line family, my Meningioma Support group... You guys are wonderful.

Sunday, November 16, 2008

Pitty Party is Over

I had a rough moment... OK a rough day. I didn't get out of my PJ's all day and, NO, my head didn't stop hurting until the Nyquil kicked in. I had my choice of taking Nyquil or taking Imatrex and Zofran. I chose Nyquil. At least this way I don't feel so hung over today.

I also think the swelling is back in my head. My arms and hands are numb again. It's hard for me to use them and grip anything. This mixed with stress could have a lot to do with the headache yesterday.

Today I am going to get off my lazy butt and go for a walk. I am going to re-join the ranks of the living and step outside. I am going to enjoy the sunshine while we have it and take in everything this new day has to offer. God is good and he gave this life to me. I am going to enjoy it.

Saturday, November 15, 2008

No matter what I do I always end up right back here

I'm the demise of this family. I can't work. SSDI takes forever to kick in. We are going to lose our car. And I'm pissed off.
I bought one thing with the money my mom left me. It was my car. When I married my husband the car was too small or something and so we got bigger one with payments which was fine at the time. Now, because of my own stupidity, We are going to lose that. I know it's a material item and I shouldn't be upset about it but right now I feel like I'm losing my mom all over again. Why is that. It's just a freakin car. I don't even like it. It's a material item and I could probably use the walking anyways.
I didn't ask for these F-ing tumors or this stupid disease. I didn't ask for the depression that goes along with it or the numbness of limbs. You can have all of this stupid crap back. I don't want it anymore. I'm done with it. I'm done messing with my boys' lives. Did they ask for this. How much F-ing crap do they have to go through before they decide they can't take living with me anymore. This stupid frickin disease....DAMN I'M PISSED OFF!!!!
So what, now I'm allowed one good night before I get a bomb shell? OK Kelly go have your fun and let lose but remember that I'm going to pull the rug out from under your feet in the morning.
SSDI has this new Compassionate Allowances Act. What it is is a Fast Tract to benefits for those with certain disabilities. They put a list of 50 on there. I guess that if you have a brain Tumor or lets say...hmmm 20 brain Tumors it's not good enough. Now, lets say you had surgery for said tumors and were left with deficits...hmmm... You can wait. Yes that's right. You can wait for 90 - 120 days for the first decision to be NO. Then you get to pay some lawyer money you don't have (let's hope by this time you're not homeless) to get yet another NO in another 2-4 years. OK, So, you pay the same lawyer, again, money you don't have (hopefully your not homeless or dead) to possibly get a yes. Maybe this is what they want. Push people to the brink so that they end up not having to pay anything.
I for one don't think it's fair to do this to my children. I'm having to chose medical over food. I'm having to chose electricity over rent and so on. I'm juggling payments with money I don't have and maybe I'm just pissed off at myself for not being more prepared for this.
I'm not so mad about losing the car I guess. It's just how am I supposed to get to my docs and how am I supposed to get groceries. What if me and the kids want to go somewhere. I should just forget what the docs say, forget how I'm feeling, buck up and go back to work. I need to take care of this family.

I really need to quit trying to have fun. Every time I go out or try to have fun I always end up right here the next morning......

Friday, November 14, 2008

Insomnia and getting ready to Party

Yep, the two really don't go together. I'm going to take a nap here in a minute but before I do I wanted to put down some thoughts. Tonight is my "Girly Party" so I need to be awake for that.
Laughter is good medicine. At two in the morning when all I wanted to do is scream and rant and rave I found myself laughing at Will Smith on Fresh Prince of Bell Air. Cracked me up. I wasn't mad anymore.
Love and friendship can help you through the toughest of times. I have seen some of the greatest people be put through the ringer and for no apparent reason other than to shut them up. Together we prevail thanks to the initiative of one woman who said enough is enough, without even saying it. Actions do speak louder than words. Now we are an on-line family and helping each other laugh and chat and heal. I feel no strains here or the need to think before I type. I know "da rules"! (LOL back the first thought).
I also know that I need to stop thinking about the next step in my journey for now. I need to put it away until my next appointment. I can't let this control my life. I need to try to live as normal as I can.
I think I have some swelling going on. Nothing major. I'm still walking and talking fine. I'm not drooling and my face hasn't gone completely numb. I do, however, have numbness and tingling in my arms and hands. My neck is sore again and the lump on the back of my neck is getting bigger. I'm watching all of this and documenting it just like the docs asked me to. My little black book is filling up quick. The headache is still there but I'm living with it. I can't be too upset with all of this. I'm alive. I can hear and see and walk. I'm going to enjoy every minute of everything until I'm unable to do it anymore.
Look forward to the sweet sounds of laughing children. Morning kisses and hugs for no reason. This is worth living for. The rest is just trivial.....

Thursday, November 13, 2008

Wow What A Week

This week a wonderful person decided to start her own version of a support group uncensored and friendly to the extent that bashing is banned. I guess that means it is censored. I couldn't believe that someone I care deeply about was getting verbally abused by people I respected. My whole world changed and my views on that changed as well. I actually cried for my friend who I have never met but who has offered me unconditional support.
A wise person told me that there are two types of people in this world.
1. Givers - they would give you their last dollar if you needed it
2. Takers - they would take your last dollar even though they didn't need it.

I am the first one. I would and have given my last dollar to a person in need and I would do it again. I've helped to organize a group to sponsor a family for Christmas, that was fun. I am knitting scarfs right now for all my friends and family and to donate to the homeless. I am also trying to find a way to sell them to help raise money for research for NF2 or Brain Tumor Research.

All in all I truly believe in the vision of this new website. Its friendly and fun. I find myself on it all the time. I'm inviting my friends and family because they are in this journey with me.

Update on me.
I had some twitches on my right side and vibrations in my right ear, nothing major. I have more energy now, in spurts. I hope that means I lose some weight. I am smiling more and crying less. I think my meds are leveling out finally. I still get fatigued and confused, forgetful but I'm working on that. My memory is slowly getting better.
I'm still waiting on the results of my EEG and my next appointments are December 1st with my PCP and December 16 with my NS. I also have another MRI coming up.
In January I am off to Maryland for the study and you know they will find a cure for this nasty disease.....I just know they will....
Have a good day everyone and visit the new site. You will love it. You don't have to have a tumor to join. You know me and that's good enough. We need you there....

Monday, November 10, 2008

Thankfull for the gifts in my life

I'm not a flashy person. I don't require much. All I really want in life is Family, Stability, Health, Happiness, and Love. Not necessarily in that order. I have a roof over my head. I have a family who loves me. I have friends who are second to none. My life is good.
I am back!
My medications are finally levelling off. It took a while but it seems as if the depression I was experiencing did have something to do with the medication I was on. So, they put you on another medication to counteract it. I haven't cried in two days. I'm still a little moody but I'm not expecting an overnight cure.
I am working on a fundraising idea with a group of other brain tumor survivors. They actually are listening to my ideas and we are all contributing to each others. It's amazing what we can all accomplish when we work together and not against each other.
Today I am going to try to clean my house and finish my laundry. Rainy season has hit here in the Pacific Northwest so we have to get really creative about what we do indoors. I have a bunch of craft ideas that we will be starting soon. I also save a lot of the major re-arranging and cleaning for this time of year to help keep us busy. If we can do it we might even paint.
I am also wanting to learn how to use my sewing machine. I want to start making quilts. I want to learn how to make story quilts and donate those as well. Next year, it would be nice to be able to donate blankets and scarfs to the homeless shelters downtown. We all know that they are filling up fast and people are hurting. I think that maybe this is what I'm supposed to do. I already have people wanting to give me fabric and even help me to make stuff. All in the name of Giving. It feels really good.
It would also be nice to try to set up a fund for single parents who get brain tumors and have to have surgery. I mean it was hard for us to survive and we couldn't have done it without the help of friends and family. I couldn't imagine being all alone and going through this.
I think that I just found my higher purpose. Now, how to I get this off the ground. How do I make this happen. I have ideas for fundraising, now I just need someone with the brains to help make it happen.
As you can see I am feeling better. My headaches are dull and still there but no more seizures. I'm still not sleeping but I can deal with that. I'm in a better mood. I smile more. I laugh more. I'm seeing the humor in life again and it's rubbing off on my family.
We are going to make it. I am going to make it......

Tuesday, November 4, 2008

No work for Kelly

I went to my PCP and he stated that work isn't in the cards for me right now. We need to figure out what is going on with me and my new symptoms. He told me that I was this great patient for years where the worst I has was my yearly sinus infection. I asked him if he has a magic button that would swoop me back to that time. I started crying and he told me that I have a lot on my plate. He reminded me that I didn't ask for this and he asked me about my depression. I was very honest and we are going to try anti-depressants. I hope they work. He also wants me snacking on more fruits and veggies even though I'm not hungry because of the meds. All in all he is going to continue to see me once a month until I'm feeling comfortable with my "new" surroundings. He is a good doctor. I also found out today that the company that I worked for cancelled my medical insurance and didn't even send me my COBRA paperwork....I fixed it but I was so mad. People just don't get it. They just don't understand that they are taking someone elses life into their hands....I hope everyone is doing good.

Sunday, November 2, 2008

Today marks 4 years...

Not for my tumors but for the anniversary of my moms passing. A day where I still wake up with a tear in my eye. I still light 5 candles, on the same candle holder as we did on the day she past. I still feel the same as I did on that day.
I miss her so much. I just want her to give me a hug and hold me. I want her to tell me that everything is going to be OK. I need her so much right now. I need my Mom. Everyone tells me she is here with me, and I know that, but I'm selfish and I want her here.
She would light up a room just by smiling. She was so smart and beautiful and wonderful. She loved unconditionally and gave the same way. She was the best Grandma, I think that was her favorite part of life.
People take for granted how precious life is. They take chances and don't stop to smell the flowers or to watch the waves crash in. They move too fast and worry too much. I'm one of those people. I find that all I really need and all I really want in this world is the love of my family and friends, good health, and Stability. That's it. I need nor want anything more. I don't want a flashy car or house. I don't need fancy clothes. I want my family to be happy where ever we are with what we have. I want my boys to understand and know the joy of giving.