Monday, December 29, 2008

I haven't posted in a while

Christmas came and went. It always comes so fast. The kids had a blast as did I. We had a theme this year. Family Fun!
Each present consisted of good ol' fashioned fun. Monopoly, Jenga, Boggle, Uno spin it, and regular playing cards. We played all of them. It has been so much fun. Lots of smiles and laughing till our sides hurt.
The boys got Leggos and Bionicles. The also got PJ's and underwear. I got a camera and a foot massager. Our house was decorated to the hilt and Santa did come and eat all of his goodies. Matthew and Timothy checked that out first thing. Every year I think they aren't going to believe and every year they prove me wrong. I'm glad they prove me wrong.
My health is good. I am a bit weak but I think I need more exercise. I go today to pick up my prescription for my new dosage of Topomax. They are upping my dosage again. I hope it helps this time. I just go with the flow.
I hope for this year that the Christmas spirit stays with everyone all year long. I don't want it to go away after the season ends. This year is going to be rough on everyone and we need to stick together and make it through in order to survive. I know that there's more to life than material things. Life, Love, Laughter.....This is worth fighting for. Morning smiles and cuddles. Sunrises and Sunsets. Children laughing running and playing. Families enjoying themselves. This is what God wanted for us. Not mean vindictive people who can walk past a hungry sick child and not think twice about it. Or send your child off to their room to play video games because they are "bothering you" or you are "too busy" for them. Family and true friends are what are going to help make it through this new depression.
My grandma is still alive today. She is a fighter and knows how to survive. She knows how to pinch pennies and she knows how to cope with the pain of losing a daughter to the same cancer she survived. She knows how precious life is and knows Gods will.
Life is worth so much more than what people are giving it credit for. It's worth so much more than what I have given it credit for in the past.
I am so thankful for my family and friends. For the love and laughter. For the smiles and hugs and the wonderful family Christmas. My life is good.

Friday, December 12, 2008

So This is What I can learn to Expect....

I just don't have to like it.....
I'm pissed off at SSDI. They re-started my case as of December 9th with no other explanation than the computer is never wrong. Hmmmm, sounds a little fishy to me. I cried so hard after I found that out. I started telling my husband, who I love and adore, about this. I told him that I know he didn't sign up for this and if he wanted out he could leave me and I would never hold it against him. He, of coarse, told me to knock it off and that he's in it for the long haul. It's just not fair to him.
After crying and stressing out like I did I gave myself a monster headache. I couldn't believe how bad or how long it's lasted. It feels as if a hammer is hitting the inside of my scull where my incisions are and behind my forehead. Crazy feeling but I'm seeing spots and I've been down for two days. Yesterday was so bad that I was on anti-nausea meds. I just want all of this to go away.
I think that if our economy is going to go to crap and I need to work extra hard to take care of my family then God can take these back. I don't have the time or energy for them. Also, how am I supposed to help others if I can barely help myself. I want to be able to donate something anything to others and I don't know how. This in itself is driving me nuts.
I am thankful for my family and friends. I am so thankful to be alive and be able to watch my children grow.
Christmas is coming and I'm only a little bummed that my hubby is busting his buns to do everything and I'm the one who has to tell him that we need to concentrate on what the boys want and what the bills are. I also told him that I hate that we always skip me. Skip a gift for me. I was in the hospital for our anniversary. We were broke and he was gone on my birthdays, Christmas, etc..... Depression is sinking in again. I asked him to surprise me. I don't want fancy jewelry. I don't want expensive anything. I want something he can surprise me with wrapped and under the tree. Something that benefits me not him or the kids. Something for me not the house or kitchen, car...etc. Am I being selfish? I feel selfish. Forget I said anything. I guess I just wanted to say it or write it down.
I would be happy if he would just listen to what I had to say as opposed to just nodding and doing what he thinks I said. Typical marriage....
I'm off to run Friday errands....
Have a wonderful day everyone

Monday, December 1, 2008

When do I stop being so scared?

When do I wake up and not be scared of this? When is it ok for me to walk outside and not be afraid of a seizure of of getting into an accident because of this stupid thing. I'm afraid to walk by myself for fear of falling.
FEAR has taken over my life. WHY?
I'm trying to pay the bills and I'm trying to get more money in the door. I'm trying to get my dissability to start paying me and I'm trying to get the family ready for Chrismas. I'm trying to hold it all together. All I want to do is cry. I know I need to do all of these things and with our limited means it's not hapening. I am trying to fix this and take care of that. I'm trying to go here and do this when all I really want to do is crawl into a ball and cry my eyes out. I should be really thankful that God gave me a second chance at life. I shoud and I am grateful for this opportunity but at what cost?
Our electric on the verge of being shut off
Our phone on the verge of being shut off
Our gas on the verge of being shut off
Our car on the verge of being repo'd
I'm so tired of fighting all the time to stay afloat only to end up arguing with my family and ending up feeling even lower than I already do about all of this.
I'm tired. I need some relief. I need the government to realize that the "American Dream" has died. I need them to realize that we are becoming a third world country. I need them to realize that I am losing my fight inside. I don't have much strength left. I can only juggle so much before I feel like I am going to completly lose it.
I pray that God gives the strength and wisdom to the powers that be at the SSI office and in congress to push my application through. I pray that we get some relief. I pray that the strength is returned to our family and to my soul so that we can go back to the way we were. I pray that people stop being so selfish and learn how to pay it forward like so many of my good friends have done for my family and we intend to do in the future. I pray for peace in this world as well as in my life. I hope that doesn't sound too selfish of me.

Today I have an appointment with my PCP and tomorrow I have an appointment for an MRI. I hope that I figure out what the next step is in this game.
Happy Holidays Everyone!

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.

Thursday, October 30, 2008

Just some pics guys

And life goes on. Sorry the last one is a little blurry. The drugs they give you in the hospital are great!!!!!

The ability to heal yourself is within yourself....

This statement has always puzzled me. I mean I know I feel better when I feel good about myself. I feel great when the people that I'm surrounded by are happy go lucky. I don't like this complainer person that I've become lately.....
The last couple of days have been a huge eye opener for me. I had a seizure (maybe not according to my Neurologist), had an emotional breakdown, and had an EEG. Now, with the three comes one good, I got accepted into the clinical study that I wanted to. They are going to fly me to Bethesda, MD twice a year starting in January. They will run all kinds of tests at their cost. I will in turn get to take copies to my NS and he can use those. If they find another study that will benefit me they will give me the opportunity to join. This is going to save us tons of money and give me access to worlds of information that I could only dream about obtaining. These doctors are the best of the best, as my NS put it. He actually trained with the head NS in charge at the NINDS. I'm pretty excited about this.
So, things are starting to look up. My meds are upped. I'm sleeping a little more. My mood is getting better my life is going to turn around. Communication is going to be my goal from hear on out. I will voice myself more to my doctors and to my family. They all deserve to know exactly how I feel when I'm feeling it. There's no reason I need to be going through this alone and there's no reason for me to be strong all the time. I have feelings too and I need to talk about them too.

So, many of you know this is my new normal. I will have my symptoms for the rest of my life. They will not get better only funnier (worse). I need to adapt my life to them.
New symptoms since surgery:
*slurred speech (occasionally)
*extreme fatigue
*blank stares/lost in thought with no thoughts
*short term memory loss
*burning sensation across forehead
*loss of balance occasionally
*tired(not the same as the fatigue)
I know there's more but I just can't think of it right now. I have been battling a bit of depression too.
I am giving myself the goal to adapt to my new normal and try to enjoy the comedy in it. It's all I can do. I will continue to wake up every morning and tell myself that I love and respect myself just the way I am. I will start my days with morning hugs and kisses from my boys. I will find beauty in every moment.

Tuesday, October 28, 2008

New information on Seizures....

Author: FT Mangano, AE McBride, and SJ Schneider
Brain tumors are a common cause of epilepsy in adults. More than one-third of the 35,000 patients per year with newly diagnosed brain tumors develop epileptic seizures. If the tumor involves the cerebral hemispheres, seizures occur in at least 50% of cases.17,18
Some predictive factors for seizure occurrence include:81,83
tumor location in the frontal or parietal regions
evidence of cerebral hemispheric dysfunction
incomplete tumor resection
Any brain tumor, benign or malignant, common or uncommon, can cause seizures.19–23 Those more highly associated with the development of epilepsy include:83,88
hemorrhagic lesions
multiple metastases
slowly growing primary tumors
tumors near the Rolandic fissure
Patients with low-grade tumors may be more likely to develop epilepsy, possibly because their longer survival allows more time for seizures to develop.81 One retrospective study found a median interval of 8 weeks between diagnosis of a brain tumor and a first seizure.83
The tumors most often presenting with seizures in adults are:24–30
dysembryoplastic neuroepithelial tumors (DNETs) 90-100
glioblastoma multiforme34
low-grade astrocytoma69
metastatic tumors41
Epilepsy in children is associated with brain tumors less often than in adults. Tumors still must be ruled out, however, even if the child has no neurologic deficits.32–34 If a tumor is diagnosed, up to 46% of these patients may have intractable seizures.32,35,36 Most tumors occur in the temporal or frontal lobes. As in adults, epileptogenic brain tumors in children may be benign or malignant. The most common tumors associated with epilepsy in children are:30,36–38
low-grade astrocytomas

OK, so you may be asking why did I post this. My doctor thinks I'm nuts. She doesn't think that I had a seizure at all. She just thinks that this is the way my life is going to go. She did order an EEG for tomorrow morning and then I go back to see her again in two weeks. I asked her if this is going to be the norm for me and she said yes, the new normal. I asked her if I'm looking more at Quality vs Quantity now and she also said yes. So, here I am. Now what? I started crying in her office. I told her I want to go back to work but that I'm scared. I'm scared to have a seizure or to slur my words or forget my way. She asked me if I applied for SSDI yet and I told her yes. She said good. One thing that I need to understand is that Neurologists and Neurosurgeons don't really have personalities. They are extremely smart but no real people skills.
I go in for an EEG tomorrow morning to see if I am having any detectable seizures and then back to my Neurologist in two weeks to see the results. I really don't know what I'm hoping for.

Monday, October 27, 2008

Neurofibromatosis Type 2

Wikipedia Definition of NF2:
Neurofibromatosis Type II (or "MISME Syndrome", for "Multiple Inherited Schwannomas, Meningiomas, and Ependymomas") is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene, which, it seems, influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.

OK, True definition right there, lets take it a step further. They removed four Meningiomas on August 25 so her is that definition from the same source:
Meningiomas are the most common benign tumors of the brain (95% of benign tumors). However they can also be malignant.[1] They arise from the arachnoidal cap cells of the meninges and represent about 15% of all primary brain tumors. They are more common in females than in males (2:1) and have a peak incidence in the sixth and seventh decades. Most cases are sporadic while some are familial. There has been some evidence that persons who have undergone radiation to the scalp are more at risk for developing meningiomas. The most frequent genetic mutations involved in meningiomas are inactivation mutations in the Neurofibromatosis 2 gene (merlin) on chromosome 22q.
A number of studies have linked the slow growing Meningiomas tumor to exposure to certain weed killers, herbicides and pesticides typically used in farming. Women are at a particularly increased risk if they have been exposed to these chemicals for a number of years whereas men with exposure to these chemicals show no increased risk for brain cancer.[2]

Another type of tumor that I have is a Vestibular Schwannoma. Here is the definition for that from Wikipedia:
A schwannoma is a kind of tumor originating from the Schwann cells. The insulating myelin sheath which covers peripheral nerves is produced by the Schwann cells. Hence, one kind of tumor originating from the Schwann cells is called a schwannoma.
Schwannomas are very homogeneous tumors consisting only of Schwann cells. The tumor cells always stay on the outside of the nerve, but the tumor itself may either push the nerve aside and/or up against a bony structure (thereby possibly causing damage). Schwannomas are relatively slow growing. For reasons not yet understood, schwannomas are mostly benign and less than 1% become malignant (degenerate into cancer). This form of cancer is known as malignant peripheral nerve sheath tumour or malignant Schwannoma or neurofibrosarcoma.
Schwannomas can arise from a genetic disorder called neurofibromatosis.
schwannomas can be removed from the nerve but can also come back.

And then you have the information that I found on the NINDS website that states:
What is Neurofibromatosis?The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.
Is there any treatment?
Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy. For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment. Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.
What is the prognosis?
In most cases, symptoms of NF1 are mild, and patients live normal and productive lives. In some cases, however, NF1 can be severely debilitating. In some cases of NF2, the damage to nearby vital structures, such as other cranial nerves and the brainstem, can be life-threatening.

This last part is what scares me the most. I guess you can do all the research you want, read all of the books, study, learn and still the outcome is that. So, what do I want?
I want to be a part of a study that is going to take a closer look into this disorder and into my family. I want them to study me and to see if I passed it on. I want to help them find a cure so that no one else has to ever go through this. I want to do my part.

I need to show my boys that I gave enough of a damn to give it my all to help find a cure so they didn't have to go through this. I want to show my family how all it takes is one person to say "Hey, this isn't going to get me down".

The anniversary of my mom passing is coming up. This time of year is pretty difficult on all of us without adding the strain of all of this. The doctors don't tell you anything unless you ask the questions. I want so badly to ask is this going to be my normal? Do you foresee me living a long life?

I am researching right now my options for radiation, more surgery, gamma knife, cyber knife etc.... So many options.

First things first, I need to figure out how to pay for my medical premiums. 1100.00 and then a whopping 230.00 a month from here on. A rip off if you ask me, but I can't live without it.

Sunday, October 26, 2008

I took two steps back this time

A seizure.....Yes you heard me right. You know, it doesn't seem fair that this is happening when all I want to do is get better and get back to work. All that I can think of is how scared I am to do this.
I am scared of having a seizure at work. I'm scared that I won't be able to do it. I am scared that I am not myself. I am striving to be normal and I'm finding that just by doing that it is putting more stress on me.
Now, I do have my normal stresses. Bills, Health, Kids, Family, ME. How about one weekend just for me. One weekend where all we do is have fun and laugh and nothing is said or mentioned about my tumors or my disorder. Not a word about me being sick. Not a word about the bills or money or anything. Just me and some close friends and a couple of bottles of wine. We could play cards and have fun. I really don't think this is too much to ask for.
I'm so tired of crying all the time. I'm so tired of worrying whether this next MRI is going to turn out OK or when they "Up" my meds what are the reactions going to be. I'm so tired of living my life around this. I want to start to enjoy myself. I want to smile again.
I don't want to be blamed for our situation anymore and I don't want to blame myself.

As you can see I have taken two steps back. I wasn't anticipating a seizure. I actually felt so good that entire day. I went to visit some old co-workers and came home and cleaned the house. Maybe I just over did it but I felt good. I got all of my medical bills in order and even called them to set up payment arrangements. Then the kids came home from school and Boom!!!! I couldn't talk, I couldn't keep my eyes open. I sat down and slept for about 30 minutes and I felt better. My youngest said I was talking funny.
That night I woke up and I had bit my cheek and tongue.

Today my head hurts again. I'm so tired of this. I'm also tired of being so negative so that needs to change. I am trying to remember by starting and ending my day looking in the mirror saying I love myself. I do find that I do this a lot throughout the day.

I am doing good. I will update everyone on my appointment with the Neurologist on Tuesday. She will let me know about my meds and work and such.

"Good Things Come To Those Who Wait" I love that quote......

Tuesday, October 21, 2008

One step forward Three steps back

Did you ever want to just crawl into a hole and disappear? Yesterday was a good day for the most part. I got a lot off my chest and was paying bills and kicking butt and then BOOM!!!! It hits this morning. Bad news.
Now I can take it like any other person but come on....first thing in the morning. I hate that phone call. And to top it off it affects me directly because as a mom we tend to put ourselves last....well guess who's going without their meds. But, at least my boys are fed. I'm ready for a new game plan. A new way for me to tackle this because I can't do it this way anymore.
Why did I have to get this disease. I mean it totally could have been anything else and we could be blaming it on that right now and not on me and my lack of working or lack of contributing or lack of whatever. I'm so sick of it. It's always my fault, or my tumors.
When do we start taking responsibility for our own actions and just say OK it's because of us not because of my sickness or anything else. I didn't cause this by myself, it was a joint effort. All this time I have been so worried about my family and how they would react to my illness I should have just kept it to myself and let it run it's coarse. At least then we couldn't blame it on that.
Blame is wrong in any sense of the meaning. It hurts. I didn't do this intentionally. I hurt everyday because my children have to suffer but they don't know it. I'm home everyday and I spend so much time with them because I want to see everything about them. I want to watch them grow and don't want to miss a thing. They do get sick of me though.
Today I am going to try Yoga. I am going to try to meditate and come up with a solution to my problem.
Have a good day everyone!

Monday, October 20, 2008

I Need to get Control back quick

I need to regain control of my life. It's my body. I tell it what to do and I tell it whether it can be sick or not. I tell it if it can be tired or if it's going to have a bad day. Mind over matter.

Life is all about choices....or so I thought.....
I did not chose this....I don't want it....Who wants brain tumors? If anyone answered yes I can give you some of mine, I have plenty.

I just want to scream.........

I want to be happy and positive like I was before surgery. I want to have that feeling again like I have control over what is going on with my body. I want to heal and be normal and have a doctor tell me that I am healed....... I want to be the miracle case. I want to be the one who changes the coarse of history so that my children don't have to repeat it. I don't want them to have this or go through it.
Matthew had another headache today. Probably caused by playing too many video games but it scares the crap out of me. I could, potentially, pass this on to my boys. My legacy to them is brain tumors. Oh and lets not forget the added seizures, numbness, paralyses, and possible death. WOW! What a great mom I am. This is truly what is killing me.
I know in my heart that I didn't do this intentionally. I never asked for this, nor would I wish this on my worst enemy. I just can't get it out of my head. Every time I look at my boys I think about it. I wonder if they could have this. If I passed it on to them. I'm really scared.
I'm scared to die before seeing them grow up, before growing old. I look forward to seeing my mom and grandpa in heaven don't get me wrong but I am scared to have someone else raise my boys. I had them, they are my responsibility, they are my life.
I guess that if I want to get the control back then I need to start by putting one foot in front of the other. I need to get out there and start trying to rehabilitate myself so that I can start working again. I need to volunteer and be productive. I need to help find a cure for this disease. I need those doctors to study me so they can find a cure. I want to help so that my boys have a chance, so my nieces and nephew have a chance. So that everyone who is diagnosed with this has a chance, including me.
I may not sound OK but I am. I wake up and take it one day at a time. I thank God for giving me one more day. I look around and I am thankful. I am trying to stay as strong as possible for my family. I think that I need someone to be strong for me sometimes.

Friday, October 17, 2008

The list I wish I had before surgery

Thanks to all of my wonderful friends at we have come up with the ultimate caregiver list. I wish that I had this before surgery.
Here Goes:

Sandy posted.....
*Please understand if I say or do something strange, I am not thinking clearly yet.
*Do not constantly remind me of what I can or cannot do. I had surgery, but did not revert back to my childhood.
*Please help me with my meds, as I might not be able to read the small print on the bottle yet.
*If you would make a meal for me, I'd love to eat somebody elses cooking.
*If I am wandering the house at 2 a.m. please don't ask me if I shouldn't be in bed. I'd love to be, but sleep comes harder for me now.
*Occasionally get me out of the house, even if it is just a ride to the Dairy Queen for a banana split.
*Let me work the television remote for a while.
*Offer to do the laundry or wash the dishes or change the bed sheets as I don't have a lot of energy right now.
*Take me to followup appointments with the doctors and take notes for me, as the memory isn't the best right now.
*Just help me get through this and I will be appreciative forever.
*Have patience.

Goldylocks added.......
* please make a chart of all my meds and help me remember to take them
* take me places, even if it is just for a car ride. cabin fever is awful on the recovery process
* do more around the house, cooking, cleaning, kids, etc.

Tammy added.......
"Go ahead and give me a call, I welcome phone calls."
"Make that meal if you want, it won't go to waste."
"I don't mind talking about my brain tumor, it even has a name."
"Let me tell you about my steroid highs."
"I know I might be over-doing it, but it helps to do things."
"Sometimes it just helps to vent."
"Tell me about work, and get my mind off things right now."

Carol you and I are one in the same......
Pleeeeeeeeaaaase, DON'T hover over me,I know you mean well, but it annoys ME. RESPECT MY PRIVACY. If I want to be left alone, leave me alone until I show up in the kitchen, again.Ignore my mood swings, the doctor messes around with my brain. It's nothing personal, it's my lack of inhabit ion.Thank You so much for giving me your time. I'll never forget it.

Diane added......
Take time for yourself. It will do us both good.Rent a movie that we will both enjoy and let's watch it together. Forgive me if I doze off.Talk to me about normal things--kids, work, sports, politics--anything that takes my mind off my worries.Stay positive even when I'm not. Attitudes are contagious.Make plans with me for something in the future whether it is dinner and a movie or a weekend trip to a favorite spot.

Kathy who's mother is the one with the M stated.....
Encourage and point out all the triumphs and victories, no matter how small or seemingly insignificant.Routines are good, but be flexible for much needed rest time.Schedule time for yourself. Think of yourself as a pitcher of water, if you keep pouring out to someone else it'll empty soon - go off and fill yourself up as much as possible!Remember, no matter how difficult and frustrating it might feel for you at times, the patient does not WANT or CHOOSE to be dependent. They are dealing with physical discomforts, emotional highs and lows, beaten down spirits, feeling completely out of control, and in some cases, the residue and after effects of months of anxiety, stress and fear.

Don't Look Back....ME....posted...
*Please don't point out that we are in debt up to our ears and beyond every five seconds because of my surgery. It makes me feel guilty and is making me depressed.
*Try to remember that I am the one who had surgery and occasionally I am the one who needs a shoulder to lean on and a strong arm to lead the way.
*I may not remember everything but I am not a child and it's still me under here. I am still fully able to take care of things.
*I am still able to make decisions and when you go behind my back because you "don't want to bother me" it hurts.
*Please know that I'm not going to break. I like to be cuddled and held. I want to be hugged and kissed and my hand held.

We all have a lot on our plates and are dealing with them in different ways. Some of us want to be held, some of us want to be left alone. I would love to be held but I can't stand the smell of smoke and my husband smokes right now. It doesn't mean that I don't love him or I'm not attracted to him. The meds that I am on make me sick enough without adding to them.

I'm trying to figure out why I'm feeling so bad all of the time. I don't have all of the answers but this does have a lot to do with it. I'm not the strong one that I though I was. I need a shoulder every now and then. I can't stand the fact that all I do every day is pick up and clean after everyone else. I'm a glorified janitor. I have lost me and all that is me. I have no opinion or say in anything anymore. If I want to watch one of my shows everyone leaves the room. If I leave the room I get 20 questions.
I cook, clean, and take care of the kids...that's it. I need to go back to work and find me because I sure as hell don't like who I am becoming....I don't like this person at all. I can't fake happy forever......

I called the doctor this week to see about going back to work and he doesn't think it's a good idea. I think that only one other person agrees with husband. I called my old work and they said that yes she will find a spot for me when I have a "full release" to work. I'm not sure when that's going to happen.

Thursday, October 16, 2008

My Legacy.....Is there anyone out there?

Do I have one? I'm supposed to be in the prime of my life. I'm supposed to be enjoying myself and my kids. I want to plan family vacations and plan for Christmas Break. I want to ENJOY myself. So, why can't I?
I am fighting a war in my head right now. A depression of will, Man vs beast. This beast is now taking over my happiness. It is bleeding over into my children's lives. What good am I right now? I can't work, I'm fighting to survive, I have nothing to leave my children in case something happens to me and I don't have a clear plan on what to do. I am stuck in the middle of a twisting tornado and it is finally coming to a head that this is almost too much to bear.
I need to find someone to write my story for my boys and my family. Maybe it will help someone else going through this. How many people can actually say they have more than 15-20 brain tumors? And after all of that, how many of them can still walk and talk? I'm not sure why I'm complaining. I want my life to be simple, plain, no frills. I want to enjoy the sunrises and sunsets and the sound of the trees blowing in the wind. I want to talk to my husband without snapping or having a snide comment or yelling. I want to laugh until I cry with my kids and not just cry for them. I want to be me again. The fun loving energetic crafty girl who love to run through sprinklers and play hide and go seek. The one who used to jump in the car with the kids for no reason and just drive to the beach or the falls. I want my smile back. I'm tired of worrying all the time and I'm tired of feeling like everything is my fault because I got sick. Tired of feeling like I just want to run away......
My family was just here. My aunt and uncle. I tried to put on a happy face for them. I tried to show them that I was OK, that we were OK. They must think that I am completely losing it. All I wanted to do was enjoy the time I had with them but I was constantly reminded of our money problems and all of the bad shit going on at the house. WHY???? Why couldn't I just be left to enjoy my favorite Uncle. Why couldn't I be left to be normal for once. Step outside for a bit. Forget about all of the crap for just one minute. Remember what it was like to be just me, Kelly, not Kelly with the brain tumors who is causing our family to spiral down into a financial explosion. Yes, in the same sentence as all of our bill and repairs and everything else comes Kelly's illness, disease, etc.....
It's no wonder all I want to do is sleep anymore. It's no wonder I cry all the time and its no wonder that this is the only place that I feel I am able to let all of my feeling out to.

On a lighter note, I was given a link to a study done by some place overseas and it found that this organic stuff called Propolis BIO 30 has been shown to shrink tumors in the brain caused by NF2. Pretty cool. I e-mailed them in hopes that I can get the information back and be able to purchase it. It's derived from Bee Hives and Plant extracts and is sold in New Zealand. Wish me luck as I am on my way to a better place.

It does make me feel better to get everything out on here. I am normally a pretty positive person and I don't cry in front of my boys. I am off to tackle the house today and laundry. I want to venture up to JoAnn Fabrics and get some Halloween Decorations with my gift card. I have parent teacher conferences today and a date with my boys tonight to make Ghoulishly delicious cake. Hopefully we are able to make some decorations too...... Thanks for listening to all. I am OK just to let you know. If I didn't get it all out I wouldn't be OK..... I do want to find someone to write my story....

Tuesday, October 14, 2008


And not just what I thought was my life before brain tumors but me....Kelly. I'm so tired all the time and I just want to be the lively energetic me. I'm tired of staying strong for everyone else and keeping a "happy face" for people and then when I need that fricken shoulder I don't get it.
What about me????
4 years ago next month my mom past away. This time of year already sucks for me. Not to mention the fact that I'm trying my damnedest to keep a happy face for my kids and everything just keeps falling on me like an avalanche. I'm so tired all the time. All I want to do is sleep. I can't blame everything on my tumors, I know, but I wish that just once something could come easy. One time, we could wake up and not have to worry about bills, broken washer, school clothes, electric bills, medical insurance, prescriptions, groceries, colds, LIFE. How strong does one person need to be before they just say stop and throw in the towel? When do I say when?
I don't like to complain. I really don't. I'm just tired. I'm tired of not being listened to. I'm tired of being put on the back burner and I'm tired of having something wrong with me. God needs to give this disease to someone who has the money to fight it. This is truly going to tear my family apart.

So, what prompted all of my negativity???? A bad dream, horrible, I saw my own death. And then all I could think about was my medical insurance ending and no way to get new insurance. I woke up in a cold sweat crying when I saw my kids crying.
I hate this!!!!! I hate this NF2.... I hate the FUCKING brain tumors and if I could have my way they could go somewhere else cause they sure aren't welcome here anymore........

Thursday, October 9, 2008

I still have these stupid tumors

They don't just go away, although I wish they did. I still get headaches. I still get tired. I still wear out easily and I'm still recovering.....shit!!!! It's only been 6 weeks and 2 days...but who's counting.... I am so frustrated with this whole healing process. I'm frustrated with the dizzy spells and the constant headaches and not feeling whole.
To top everything else off I have a cold. I'm not the only one in the house with a cold so my cold doesn't matter. Derek is stuck on the couch dying. Timmy is hacking in the bedroom and I'm cooking and cleaning and doing laundry and today was informed that I needed to make a doctors appointment because he couldn't deal with it. Apparently the nurses there are stupid and he can't deal with them right now. So, leave it to me to deal with????? Whatever....
I haven't been sleeping. I'm so tired. My neck and back spasm all the time. I'm trying to keep a strong face and a happy one but sometimes it's hard. I try to be superwoman but I'm not. I have to stay strong for my boys......for myself.....
OK...Pity Party over... I really hate that I vent like I do. So what if I have brain tumors... So what if I have a little cold and headache...I'm still alive and I'm still here.
A really good friend of mine sent me a smile. Yes I received it in the mail. A card, one of the talking ones and it's that lady from Saturday night live and she's going off about Constipation, zits, bloating...etc and I almost peed my pants I was laughing so hard. I needed that. He has got to be one of my best friends ever. To be able to put up with me is not an easy task.....To make me smile and almost pee my pants.....PRICELESS!!!!!

Sunday, October 5, 2008

Where are my Shoes??????

Among everything else...I can't find my shoes. Not my tennis shoes or my flip flops but my loafers. The easy to slip on, non-slip soles, cute, comfy shoes. We moved and they disappeared. Along with my shoes leaving town my waistline left too. Yep, I've gained weight and can't seem to lose it.

We are heading into the rainy season and walking the neighborhood is getting harder and harder. I can't risk getting sick but I can't risk gaining anymore weight. Yesterday Derek took me to the mall so I could buy two pairs of pants that fit. I could have cried. I still looked damn good but I'm up two sizes. This is not Kelly at her best.

I'm trying to find a treadmill on craigslist for cheep that works. That way I can work out inside and not gain anymore. Maybe when I lose the weight I will find my shoes....It could happen....

OK, I've complained enough about that. I just had major surgery and quit smoking. I was a tad overweight to begin with and that didn't help matters either. I will get over this and make it better. I will lose the weight and get back into my old clothes. The only thing is that we will have to buy new clothes again because my old clothes are old and holy and it's time to trash them. Lucky Me!!!!

I had a doctors appointment on Friday. He just wanted to make sure that my Migraines were OK and under control. He also was curious as to why I wasn't back at work. When I told him he raised an eyebrow and then said OK. I don't get it. He did tell me to come back and see him in another month and then I see the NS a month from then. Hopefully after that I will be back to work and going strong, or at least have an idea of a game plan.

Derek is home right now. He gave me a bracelet that has a silver heart on it and three charms that say Live, Laugh, Love. It is so sweet. We kind of lost our way for a second there. It wasn't fun but we are talking now and on the same page again. We love each other so much that it hurts us both when we don't communicate. Now we are talking about everything.

Well, I'm off to tackle my Sunday. I am teaching the boys how to do laundry and we have to get ready for the week. My Aunt and Uncle are coming soon and I need to get ready for them. Have a great Sunday everyone!!!!

Tuesday, September 30, 2008

What a weekend...

I love it when I can feel like I don't have this disorder at all. I felt that way for most of the weekend.
It all started with me going bowling with my good friend Kristen. I had so much fun and laughed soooo hard. I didn't bowl very well but I had an incredible time. I had two goals for the night:
1. Don't fall down
2. Have fun
I achieved both of them. What an incredible feeling to just be normal even for a night. The only thing I would have changed was the one guy Kevin kept asking me questions about my surgery and recovery. I finally said "Dude, I'm here aren't I". I do have to say that drunk idiots can be quite comical when they start falling for no reason at all. He fell of the couch in slow motion. I laughed so hard I almost peed my pants....

After such a wonderful night of bowling you would think the excitement was over....but no! My wonderful brother and his family came and picked me up and got me out of my house for the weekend. They took me for a drive in the Gorge and we hiked to one of the waterfalls. It wasn't that far but I was sure glad I made it. We stopped by a brewery called Edgefield and listened to live music and drank wine ( a whole bottle). That place was so cool. Then we had smores. What a wonderful weekend.
I was able to just be Kelly. Not Kelly with the brain tumors. I found my smile again and have more energy. I am ready to tackle the world.
Today I need to scrub my kitchen floors and do some laundry. I also need to go pick up the rest of my prescription and call the doctor on the other one. How any company can charge 199.00 for a prescription is beyond me. It's bad enough that my Migraine meds are 30.00 and my other ones are 60.00. I actually need these to stay mostly pain free and they are making it really hard on me to survive when I'm spending 2 to 300 dollars a month on prescriptions.
I'm also going to call the doctor about the pain in my neck and back. This is actually affecting my sleep and my mobility. I thought I needed sleep aid but really all I need is a muscle relaxer to ease the spasms in my neck and back muscles. They cut into my neck muscles and now I have to keep stretching them and rubbing them just to keep them from hurting. I am such an complainer......
Lots to do today...I am going to do what I can to ensure everything gets done....

Friday, September 26, 2008

My Rant

Yes, we all tend to rant and rave about things or issues that bug us. Well, I have one. I'm tired of people asking me how I am and then going off on their latest cold symptoms acting like they are dying....And expecting sympathy from me. Well, I'll trade you!!!! is generally my response.
I'm probably just bored and bitter and that's why I'm feeling the way I am. I'm usually pretty sympathetic but a cold....come on....
I have another issue that happened that I can't talk about on here. Maybe someday but not today. I just want to be normal more than anything else. I don't want to be a burden on anyone. I just want to take care of everything on my own and I can't. I'm being torn in so many directions that sooner or later I'm going to break. Oh well, that's my little bitch and now I'm done.
The boys are off to their dads. He is taking them to their aunts house which isn't really the greatest place to be. Oh well, I haven't been there in a while maybe it's better now.
You know, I really don't like to complain about things but I'm sure glad I started this blog. I feel so much better now. Sometimes it helps to just get it all off of your chest.
Have a great weekend everyone.
Next appointment with Neurologist is Monday. I will update then.

Tuesday, September 23, 2008

So, I have brain tumors....What's your excuse???

I really need to get a shirt or a hat that says that. I blame almost everything on my tumors. Why not.... most of the time it gets a laugh.
Yesterday I went outside to get some chicken from the freezer in the garage. Normally this wouldn't be a big ordeal but this time was different. You see, the door to the garage has a funky lock on it where it's unlocked on the inside and locked on the outside. Yes, you guessed it. I locked myself out.
Immediately I started crying. Not because I wanted to but because one of the side effects to the surgery and coming off the steroid is over active emotions. Once I start crying I can't stop. Thank God I had my cell phone. I called my friends and they immediately came over. They were so good to me. They tried to break into my house and it didn't work. That was sure comforting. Then we called the locksmith.
65.00 and 30 seconds later I was in my house. I was locked out for 2 hours. I'm laughing about it now and so is everyone else.
Today I had my appointment with SSI. I applied for SSDI which is disability benefits. The gal that was working with me was very helpful and at the end of a 2 hour meeting she said there was no reason for me to be denied. She asked me so many questions and was able to see that YES I have memory loss. She told me that it was good that I was so prepared and brought all my medical records and had all of their phone numbers and addresses. She also told me it wasn't a big deal that I didn't have my birth certificate. They are passing some new rules that make it so they don't require them anymore.
She was, to say the least, great. She answered my questions, gave me a few tips, and was very pleasant. What I didn't like was the lighting. I'm still taking medications to get rid of this nifty migraine that I have now. I hate headaches.
Other than the headache everything is going good. Life is good and I'm learning to live with the fact that I need to take the time to heal. I need to allow myself to relax and heal. If I say this out loud enough then I won't allow myself to get that cooped up feeling. It's not so bad because I have a nice house in a nice neighborhood and great kids. My family and friends are the best. I have a friend who calls me to take my mind off of things. He usually makes me laugh and always makes me smile. I have another friend who picked me up for ice cream and brought me Minnie mouse ears. She has also taken time out of her busy day to help me out. I have another friend who helped me move. She was one of the hardest workers I've ever seen.
I am Blessed! To live is a gift....And I will never forget it.

Friday, September 19, 2008

At Home Mom Blues

I am going nuts staying at home and trying to keep myself occupied. I clean and cook and do the laundry. I ride my kids about homework and picking up after themselves. I just don't know what to do to keep myself busy.
I knit as much as I can. I talk to myself and the dog. I log onto the computer and to my Meningioma Mommas board and reply to all of the posts. I am so used to working that I miss it even though I didn't like it all that much. So, what now?

I filled out the form to volunteer at the boys' school. I get my driving privileges back in 35 days. That will help tremendously. I have a meeting at the SSI office on Monday. Keep your fingers crossed for me.

Then after saying all of this I wonder why am I complaining. I finally get to be a huge positive part of my boys' life. I'm ALIVE!!!! I survived brain surgery. Not just Brain surgery but major brain surgery. Two incisions on my scull one 8 1/2 inches and the other 4 inches. I also had 49 staples and two other small incisions where the drainage tubes were. Yes Pictures are coming. We took pics of the incision site (didn't look that bad). I actually reacted very well to the surgery. We also took pics of me in recovery. I looked pale but otherwise I was smiling.

I am trying to make the most of this. I am thankful for all of the gifts in my life. I wouldn't trade this life for anything. I am blessed.

With all of that said here is my new short term goal list:

1. Be able to walk around the entire block by myself
2. Be able to read a book again
3. lose 50 lbs by this time next year
4. Be a more positive person
5. Take time to smell the roses (slow down and enjoy life)

I'm sure that I will add to this list as I continue to add to my long term goal list. I will continue to thank God for all of the gifts in my life as well as giving me one more day. I will also try to find a new hobby or maybe a new career that doesn't involve staring at the computer all day.

I'm done venting now.... To all who read this Have a wonderful, positive day!

Tuesday, September 16, 2008

Surgery went well

I had my surgery on 8/25/08. It was 7 hours of hell for my family and friends but I really don't remember any of it. I am still recovering and taking it one day at a time.
Things I had to deal with after surgery:
Noisy ICU
Still wasn't sleeping
Swelling of my face and body from steroids
Wasn't able to walk well
49 staples to my head
Once home from the hospital....
I had pain and lack of sleep from rolling onto incision site
One major migraine which put me in the hospital
Slight depression due to the fact that I am stuck in this house
Can't seem to do anything without being tired
I have a hard time focusing on the computer and TV.
I can't read a book yet and this sucks!!!!!

So, I'm a little down on myself. I should be looking at it like Holy Shit! I just survived brain surgery. I should be thanking my lucky stars...which I do but why do I feel so down? I can't seem to figure it out.
All is going good. I got my staples out and nearly broke Derek's finger doing it. I am off nearly all my meds except for the occasional pain med. I think they are going to put me back on Topomax for the migraines though.
I got a letter from SSI stating that I was denied benefits due to the fact that I didn't apply for them. Hmmmmmm, my appointment isn't until September 23rd and they are supposed to help me fill out the forms then. How can I be denied for this.
I'm just full of so much emotion right now. I cry at everything and don't know why. I can't sleep right or eat right. I'm even having to force myself to smile.... I just want to be normal and back to my old self.

I've always been able to get myself out of this funk but it feels as if this is going to take some work. I hope it ends soon. Sorry I'm not my normal upbeat self but I strive to be there soon. I just need to vent and this is the only way I can seem to do it.

I am thankful for my wonderful surgery and quick recovery. I am also very thankful for my family and friends. Everyone has been so quick to help me out and put my care top on their list. I am really thankful that I survived and that everything went so well. I am thankful to be alive.....

Saturday, August 23, 2008

Amazing Thoughts!

As I sit here I can't help but think about the fact that it's less than 48 hours to surgery. The thoughts that are going through my head are...
1. Sitting on a porch swing watching my "Grandkids" play in the yard
2. How should I decorate the house for Christmas
3. If the landlord decides to sell this house to us how would I change things a bit....this is fun for me.....
4. How many happy people are coming over tonight!!!

Tonight is our Pre-Tumor removal Party. I want to be surrounded by happy go lucky people with positive thoughts and just have fun. We are going to BBQ and hang out and tell jokes and laugh.... I can't wait. We are so happy to be in this house and blessed that we all love it as much as we do. I am still in shock that we are here. We love everything about it. It feels like home. Our home.
I can't wait till Christmas when we can put up lights outside and decorations. The boys will get to help and I've already decided on colorful big lights. I want the Christmas tree in the family room in front of the slider and then maybe some animated deer in the front lawn.
Next summer I'm already planning, in my head, BBQ's and birthday parties. Matthew wants his birthday party here this year. I will make that happen. So much to look forward to and shoot for.
So my amazing thoughts that keep me going.....My husband, kids, family, friends.... Who could ask for anything more. I have a life that I could never imagined. I am so blessed.
Tomorrow we pick my aunt up from the airport. She is flying in from Michigan to help me out and be there for me. We have had a special relationship since I was born. I've always been Susie's girl. She taught me all about unconditional love and how to follow my hopes and dreams. She also taught me to look at the good in people but not to take any crap from anyone. She was a huge advocate on me mending my relationship with my mom and that was the best thing that could have ever happened to me. She will be here to help us all out. Her strength will help Derek and my brothers and they in turn will be able to help her.
My cold is almost gone so I don't foresee pushing out surgery. Everything is a go and then it's just healing from there. I can't wait to come home from the hospital and sit in my moms chair by the window and relax. They said they are going to wean me off the Steroids before they send me home...YIPPPPEEEE..... I shouldn't be on any other meds for anything other than pain at that point. This is a good thing.
The next steps include Gamma Knife...for the residual and possibly another surgery or two. First things first....Survive Brain surgery....The first thing on my to do list. I will do this. I will come home and I will be 100%. This is my goal. I have asked all of my friends and family to keep me motivated and going. I have friends who want to take me walking and I think that's great.
Lots to look forward to. This is what keeps me going. Keeps me moving forward one step at a time.

Friday, August 22, 2008


Well, if brain tumors and moving wasn't enough stress then throw in the family explosion.... Last night was a huge eye opener for me. The kids and Derek and me just lost it. Yelling and crying and whoa!!! I couldn't stop it. It was like a freight train that just plowed into us. One minute we were eating cake and laughing and the next minute it was world war three complete with atom bombs.
We did diffuse it and had a really good talk. The boys are really stressed right now and I'm thinking counseling is going to be a good thing. Now, Derek is really stressed. He has taken on so much and all I really want to know is how he is feeling. I want him to talk to me. Let me know his fears. I don't want him to take this all on himself. We are still a team and I love him so much. I saw a part of him yesterday that I have never seen before. I just don't want him to bottle all of this up and not have anyone to talk to. I am trying to get a hold of his mom to see if she can try to talk to him a bit. I also told my brother to take him aside and help him out. I think Derek just doesn't want to stress me out any. I love him for that but I can't stand to see him bottle this up and not open up to me. I still want to be there for him and the boys in every way. That's my job. That's who I am.
Surgery is 3 days away and my cold is getting better. My throat doesn't hurt anymore and all I have is a cough. The hospital called me yesterday and registered me then told me that I need to pay them $500.00 for the deductible and they wanted it right then. I explained it to her that payday was the day after surgery and I would talk to my doctor about it. I don't think he'll postpone surgery because of that. My cold on the other hand he will. I have to call him on Sunday to let him know how I am feeling. Lots of fluids and Vitamin C is what I am doing. Seems to be working.
Matty and Timmy are doing good. I feel so bad for them because as much as they try to understand what is going on they really don't. Matty cries and that's how he deals with everything. Timmy acts out and takes it out on his brother. I don't know what to do but just love them and hold them. Matty doesn't want to leave my side and Timmy just doesn't know which way is up. They are going to their dads on Sunday so I hope it will give them a break from all of this stress. I know it's a lot to take for us adults but I can't imagine how they must be feeling. I wrote them letters this morning for their first day of school. This will be the first one that I won't be there. They are starting a new school and meeting new friends and have a new home and so many changes. Throw in that their mom is having major brain surgery and WOW too much for such young kids to take.
They are strong boys though. I am truly blessed to have them. I couldn't have asked or wished for better children. I just wish that I could protect them from all of this. As a mother we never want our children to see us like this. We don't want them to see us in pain or crying and we don't want them to see us with staples in our heads. We have prepared them but given them the option to be here or at their dads. They can make the choice.
Today I am going over to my old apartment to do the final walk through. They will probably charge me 400.00 for move out damages and I'm OK with that because I couldn't clean the apartment. We turn in the keys and close that chapter of our lives. Kind of sad really. It was a big deal for us to move into that place and now we have a house. We are moving up in the world. All of our dreams and wishes are going to come true one step at a time.
I still have my to do list and look at it often.

Number one is and will be: SURVIVE BRAIN SURGERY NEXT MONDAY

Just so everyone knows, Keep me positive....Don't let me look back.....Keep me moving forward.... I am going to need help from everyone on this..... I can't let this get me down.... I can only let it move me forward.

Thursday, August 21, 2008

Word Vomet

So, yes it falls from your tongue and it doesn't stop. At least it doesn't from mine. I guess with all that is going on in my life I feel that if I have something to say I just say it.
My brother Kevin came by last night and saw the new house. He hung out for so long and it was nice. I am trying to surround myself with positivity and it's hard because I think that I did something to a friend (I think I know what it was) not to hurt her or make her mad but I did it. Word vomit. I was pissed off at my situation and took it out on someone else....Not cool! Not right. I hope she forgives me.
Right now my nerves are shot. 4 days to surgery. I will be recovering this time next week. I have so many fears and yet I have so many wants. I'm trying to stay busy and keep moving which isn't hard considering all that we have to do to get this house in order. I need to put clothes away today and try to get pictures on the walls. I have people coming over on Saturday and I want at least a pathway through the house. I just don't know what to do first.
My niece Kayla spent the night last night and is sleeping in my moms chair. She is so cute and her smile brightens the room. She loves to help me out and keeps me motivated to keep moving. Derek is on a mission to fix everything and anything he can in this house. He installed ceiling fans and light fixtures and fixed the garage door. He even fixed my mom's chair so the leg won't fall off. I think his nerves are setting in too. If he keeps moving then there's no time to think too much about everything else. I know all about that.
They are going to either cut an 18" incision that wraps around my ear or two 8" and one 4" incision depending on what happens and the best plan when they get in there. They are only shaving strips of my hair so a comb over is what I will have when it's done. Not a problem. My hair grows fast and there's a lot of it.
My friends and family are being great right now. Everyone is jumping in and helping us out with everything. I have a guarding angel who's words and voice over the phone calm me and put me back in a good place. He knows who he is and will always be my family. He is in our hearts everyday. Pay if Forward is his motto and should be everyone elses. He called yesterday and right at a perfect time. I was on the verge of crying again and he just calmed me down. He reminded me that, YES I CAN DO THIS! Yes I can. We all need a good kick in the ass from time to time to remind us that everything is possible.
I will continue to write. I hope that everything goes smoothly and that I'm able to be back home soon and recover.

Wednesday, August 20, 2008

Surgery Date

My surgery is set for Monday August 25th at 6:15am. I had my Pre-Op appointment today and I'm just a bit overwhelmed. I mean this is something that can make me def and cause paralysis and loss of speech. This can also kill me if I don't take care of it. He talked about 18" incisions and stints to relieve pressure and catheters and ICU. He told me I'd feel like a got into a fight with a MAC truck and won. I kinda laughed at that part.
My brother gave me the biggest hug and I could just tell that everything is going to be OK. He is so strong. So, why am I so scared? Why the HELL does this have to happen to me and my family? What did we do to deserve this? What does anyone do to deserve this?

OK so I'm done I think. I'm just so emotionally gone right now. I really don't know which way is up and I'm not even sure how to walk or talk. I keep saying the wrong things and I don't mean to. I really just want to say that I am going to make it through. I know it's going to be hard but this isn't going to stop me. Throw another mountain in my way and I will conquer it. My flag will be at the top saying "Kiss my ass is this all you've got?"

My Mom is with me. I felt her today. I know how she felt when she was going through everything she went through. I had a feeling for a split second of hopelessness and then like an instant she was there holding me. That which doesn't kill us only makes us stronger.... I'm Fricken Superwoman....don't you forget it....