One horrible week
June 10, 2009 5:17am
From june fourth until now has been extremely shitty. Pardon my french, but it really has. Ever since my husband and I got back from vacation …
Progress
50 %
krkramer
2:44am, April 29, 2009
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About Me
krkramer
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About Me
I am a 34 year old with neurofibromatosis type two. I was not diagnosed with it until I was 28. I have had epilepsy since I was three and a half. My mother died from nf2 at age 54. I feel all alone with no moral support. I also have severe depression and have almost committed suicide twice. I can't work. I can't get disability, my medicine makes me sleep all the time . This disease is destroying my life and sometimes my mind. I feel helpless. My family hates me and all I want to do Is die! I also have grand mal seizures. I have had them since i was three and a half. I have lived most of my life in the hospital. I have a loving husband who takes very great care of me. I don't know if these health issues i have will ever go away. I have many severe healt h issues. I have a hard time dealing with them. I have had two tumors removed from my brain from my seizures, and my left frontal lobe completely removed. I still have seizures though. My meds sometimes work and sometimes don't. Its nerver racking going through life being sick all the time. Do we ever get relief? Is there anyone out there i can confide in and go through this together? Can i make best friends on here? Please! I can't do this alone. My family does not even support me. Its only me and my husband dealing with this together. Most of the time he works so I am a loner. I wish god could miracoulously cure me so I would me healed. I can't work. I can't drive. I am a housewife that can't bear children because of my diseases. It killing me inside and outside I am screaming for help! I was raped when I was a young girl and still have nightmares about it today.
I am a 34 year old with neurofibromatosis type two. I was not diagnosed with it until I was 28. I have had epilepsy since I was three and a half. My mother died from nf2 at age 54. I feel all alone with no moral support. I also have severe depression and have almost committed suicide twice. I can't work. I can't get disability, my medicine makes me sleep all the time . This disease is destroying my life and sometimes my mind. I feel helpless. My family hates me and all I want to do Is die! I also
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Interests
I love camping, spending time with my husband and family. I love to do arts and crafts, and sing. I listen to christian music every chance i get.
I love camping, spending time with my husband and family. I love to do arts and crafts, and sing. I listen
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Recent Activity
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Journal
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About my vacation
June 10, 2009 4:23am
I know I have not wrote in my journal lately, but alot has been going on and i will tell you in my journal. My vacation was in wisconsin dells from …
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My thoughts
May 31, 2009 6:38am
Well today is the big day. We are going on our family trip to wisconsin dells. I am still leary of going. My father in law is an absolute pain. I …
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Journal Entry for May 16, 2009
May 16, 2009 11:45pm
I am sorry I have not been on lately. It has been hectic and rough around the edges. My neice of course went in for surgery last monday …
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My Thoughts At A Glance
April 30, 2009 5:06am
You know the only time I feel like I am free from everything is when I am with my husband. My mind just let's go of all of my everyday …
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Hugbook
Little Love
good morning kyndra....yes, lets stay in contact.. : ) just keep your faith in god and you live your life...one day at a time..............have a good day........love ya..hxhx
Go For It
Why can't you guys sue where he works? That's so not right. They should make an angry smiley. I guess this one's as close to an angry smiley there is. Go! Screw yourselves! LOL I hear ya on the husband saving your life thing. I would be dead without mine, no question. He's a saint for all I've put him through.
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Prayer
good morning, sending in a special prayer for you for god to make you well and also for god to continue to show you his love....... : ) you have a blessed day..loveya..hxhx
Chocolate
more chocolate for you friend, I think that the very dark chocolate makes me feel better, and chocolate brownies, hmmmm hot chocolate , it's all good. xooxox deeee
Prayer
We are so honored you joined our prayer group. We are also childhood survivors of abuse. There are so many of us. Please join us for prayer ant time. Your friends in Christ, Wally and Colleen
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Photos
krkramer hasn’t uploaded any photos yet
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Support Groups
Close Neurofibromatosis
I am a 34 year old with nf2. I had a mother that died from it on july16, 2006. She was my rock Since her death my family has drifted apart so i ha no moral support. My body is so full of tumors doctors stopped counting them. People say to me that i am a ticking timebomb and they don't know how I am still living and all I can say is by the grace of god. I am falling to pieces though with severe depression, epilepsy, and high blood pressure to boot. I can't work, and I am in pain.
Treatments
- Surgery, Brain Not Working
- When I woke up from my surgery when they removed a tumor from my ear drum They cut my balance nerve so now I am handicapped walking with a cane. Doctors said from the surgery once after the tumor was remover numerous tumors popped up all over my body now they cant count them all. I put up with enormous pain I have tumors even in my other ear on the right side. I am goin deaf in my left ear and if they remove the tumor in my right ear i will be Deaf. I have tumors down my spine and brainstem
- Crying Working / Worked
- I get severly depressed because i heve sobody for support and am in in pain with no family help. They all ignore me
Close Depression
I have been dealing with depression for many years. I have been on paxil, cymbalta elavil, adivan, and many other drugs. I currently take buspar, and zoloft. My depression has become more severe since the death of my mother. I have tried to get family support but my family does not want to. Its very difficult dealing with family and health issues alone. I need support. I pray daily strength will support me and help me to make new friends that way we can deal with it together.
Treatments
Open Epilepsy & Seizures
I have had epileptic seizures for 32 years. I lived in the hospital most of my school life because of them. I have ben called the worst names you could ever think of. Laughed at, and torchered all of my life. Never had friends. Happily married to a wonderful husband that accepts me for me and does not worry about my sickness. I have had numerous surgeries, and would like to make friends to deal with this together. It would be nice to talk to people with the same problems. we can do it together.
Treatments
- Depakote Working / Worked
- I also had more seizures being on depakote. they had me on such a high dose of it my seizures were uncontrolable.
- Dilantin Working / Worked
- I took when I was a teen. I remember they had me on so much medication that the dilantin was triggering more seizures, so I gradually was weened off of it permanently.
- Keppra Working / Worked
- I am currently taking now and it seems to be helping with little or no side effects.
- Klonopin Working / Worked
- It made me so sleepy I don't remember anything.
- Neurontin Working / Worked
- I am currently taking neurontin, but I sometimes deal with being toxic from it.
- Phenobarbital Working / Worked
- I took when I was very young and it made me go into seizures three times worse.
- Surgery, Brain Working / Worked
- My first two surgeries didn't work. my side effect from it was memory loss. Doctors said I would only have the brain of a 7th grader. My last two surgeries just slowed the process of the seizures, and also gave me paralyzed pherephial vision on my right side of my eye.
- Topamax Working / Worked
- Topomax helps me significantly mith my migranes.
Open Family Issues
I have been sexually abused by a family member. I have been treated like the black sheep from my sisters and biological father since the death of my mother. I can't have children and have severe medical problems that restrict me from many things.
Treatments
- Emotions Anonymous (EA) Working / Worked
- Only made me worse and severely depressed.
- Music Working / Worked
- Soothes me and makes everything go away until the music stops.
- Talking Working / Worked
- Never worked because all everyone ever did was make excuses for their actions. They never could tell the truth. All it did was mad it worse and broke out fights amongst the family. The family pretty much keeps to themselves. They blame me for their problems.
- Writing Working / Worked
- Makes me feel better when I write my feelings on paper.
- Zoloft Working / Worked
- Works great.
- Cymbalta Working / Worked
- Working along with the zoloft makes it a great combination.
Open Financial Challenges
My husband lost his job after 8 years at the pepsi refreshment services company all because he was late coming back for lunch due to me having a grand mal seizure. We have no insurance and very little income. I need many meds to survive flus food.
Treatments
- Budgeting Working / Worked
- very difficult with barely any income.
Open Anxiety
Treatments
- Breathing Exercises Working / Worked
- sometimes but not always
- BuSpar Working / Worked
- not at all
- Klonopin Working / Worked
- makes me sleep all the time
- Positive Thinking Working / Worked
- Best medicine i have used yet
- Xanax Working / Worked
- makes me sleepy
- Zoloft Working / Worked
- working great
Open Children Of Divorced Parents
My mom and biological father divorced when I was 3 years old because of my father being an alchoholic and screwing around on other women behind my moms back when they were married. My father became more interested with my step brothers and step mom and my step dad was always harsh,mean and very disiplinarian. My mom and him fought alot because of his ways and rudeness along with my real dad.
Treatments
- Humex Working / Worked
