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Comment by maria toscano on February 17, 2012 at 10:47am

SA Naser,

I feel the exact same way!  I get the headaches and nausea quite a bit after my job.  I feel like its definately a mental overload.  Its so hard to know whether to attribute this to the medication, the surgeries or just emotional stress but I'm glad someone out there can relate.  My friend would always want to go out after work but I just felt I couldnt handle it some times.  I feel like I just get over stimulated when I have to talk to to many people.

Comment by Beth Rosenthal on November 30, 2011 at 7:08pm

What's most difficult for me is not being financially independent.  I have minimal $ of my own. If I don't get a salary from IJB within a year, I'll go back to school. Also, my siblings, cousins are all successful. They're married, kids, financially well-off and they have never discussed my tumor or all my difficulties. I feel like they lack compassion.I've never seen them give anything, their time and heart to a charity.

 

What's been most difficult for you?

Comment by SA Naseer on November 30, 2011 at 11:23am

oops i meant it felt good to read that im not the only one.

Comment by SA Naseer on November 30, 2011 at 11:21am

Hi Beth and Rebecca,

Im 29 now after having a childhood brain tumor. I was reading your earlier posts on your current side effects.  It felt so good to finally read that I'm the only one that has experienced a long dragged out college education.  It took me 7 years to get my bachelors.  I had brain surgery to remove my brain tumor when i was in my sophomore year of college.  Now I'm almost done with my Masters.  I also feel like my side effects effect me to the point where I go for a 8 hour job, but I feel soooo drained.  I also cannot shop!  I mean if i go to a grocery store or clothing store, and if I spend more than 1 hour there, my head hurts and i feel nausea.  Anyone else experience this?  This is probably related to visual information overload for my brain!

I do remember my old self, and sometimes i wish that was me again.  Those anti-seizure medications they had me on...definetly changed me.

Comment by Beth Rosenthal on November 30, 2011 at 11:10am

Hi ladies! I was 11 when diagnosed.  I remember doing gymnastics and dance, riding bikes and running, etc. So much time has passed that it feels like those memories were a dream.

A member on here, Kayla, was 8 when diagnosed. She's mid-twenties now. So people will be joining us at some point.

Do you remember your old self?

Comment by Patricia Garner on November 30, 2011 at 5:51am

Hi, there!  I joined this group because I was diagnosed with an astrocytoma when I was 11.  And I am 45 now.  I don't join in on many discussions/forums because I was one of the "lucky ones" who, though I do have side effects, I compensate well and most people don't even know that I have a medical history.  I do not see any doctors regularly, so I don't feel like I have a lot to add to most discussions that I read.  But I do find value in reading about other people's experiences, struggles, etc because I can relate to a lot of it.  I've been there myself, after all.  I guess I'm basically here for moral support.  :) 

Comment by Beth Rosenthal on April 4, 2011 at 9:45pm

Hi Rebecca. I just saw your comment asking about the neuropsych dr's. I haven't looked for any doctors in a while. I have been very busy working on IJB's first brochure, educating about BBTs, and working at my regular job.  I would be happy to start an area for questions. Is there any way you could search for some good doctors, about 4? I'll call and get a feel of him/her. Let me know what you think.

Comment by Beth Rosenthal on April 4, 2011 at 9:36pm

Hi SA. The group is for people younger than 18 when diagnosed but, you can stay here. It affected you, too, growing up so it makes sense to be here. Welcome!

Comment by SA Naseer on April 3, 2011 at 12:47am

Hi !

I just joined this website and I'm interested in joining this group! 

I dont' know if I can join, as I wasn't diagnosed until 18 , although I had this tumor every since I was a child. I remember headaches and doctors telling my mother that it was just me asking for attention.  I was finally diagnosed, when I had a grand mal seizure, was taken to the ER and asked to have surgery in two days.  Now I'm 29 so I don't know if its okay to join, as I just didn't have the diagnosis until I almost died with the seizure.

I just havent' been able to find others like me and this is the first time I came across this website!

Comment by Beth Rosenthal on March 17, 2011 at 9:36pm

You tell her Kayla.  I went to the ER in agony from my nerve pain, trigeminal neuralgia. I went there for 12 years and on the 12th year, a nurse said " I didn't realize that you had a brain tumor" Although she came across as the dummy not doing her job, there's many like her. It's extremely disturbing that our needs aren't met. I'l finish this another time. I'm exhausted.

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