Moving On Past Your Tumor

Hi everyone. I'm curious what will help you move past your tumor, to the land of "I'm living my life, just with a brain tumor"?

I wasn't encouraged to be great and to excel because no one truly understood in 1985 what I would be able to do. Yes, my mom forced me to go to college and I'm glad she did, but I wasn't pushed too hard. I always wanted to be successful but, I couldn't because I always was feeling my chronic nerve pain and therefore, didn't have any passion for anything. Until It's Just Benign.

IJB released me from the victim role to becoming an advocate for benign brain tumor survivors, and I never realized how capable I was before. I have a lot of skills I really respect. I have tried so many new things because I feel differently about myself. Sure, I have days where I'm still sad, angry, bummed, whatever, because my pain is horrible, my hearing is bad, etc.but, I get past them. Instead of thinking I need to do everything perfectly, I do them Beth's way. For example, I have a trainer at a local gym. Yes, my left leg and arm shake as I strength train but, I'm no longer embarassed or ashamed. I'm proud. I feel like I want to try everything, Beth's way.

Perhaps your experience is different. I'm curious what would you like on this website to help make your life more positive?

Tags: ashamed, being, benign, brain, childhood, empowerment, encouragement, illness, past, role, More…the, tumor, victim

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Permalink Reply by Marilyn on July 17, 2012 at 8:48pm

Hi, I'm Marilyn & I'm new to this site. I guess I was lucky that my "tumor" turned out to be neuro cysticercosis instead of a

"real" tumor like all of you have. Cysticercosis is a worm in the brain. Mine was deep in the occipital lobe,it was removed 

in 1994 when i was 35.Just like you, there is a "new me'' who is very different. I have adjusted & adapted & take a lot for granted now. My memory isn't to great,I don't like a lot of noise,or a lot of people,or stress.

.Even the blind spot in my vision doesn't seem so bad. The thing I will never get used to though is the headaches.No matter what drugs they try,or pain pills,or alternative methods nothing gets rid of them. 

Permalink Reply by Beth Rosenthal on July 19, 2012 at 8:25pm

I'm sorry to hear about your headaches. I have nerve pain called trigeminal neuralgia. I travelled the country looking for specialists and finally found one who saved my like. He's in the Bronx, NY. Let me know if you want his name.

Did you see the worm once it was taken out? 

Permalink Reply by Marilyn on July 19, 2012 at 9:41pm
You were so lucky to find a Dr you trust " close by". I would love his info. I looked up trigeminal neuralgia, most of the meds for it I've tried too. I guess if they open your head they have a box of meds to try. My worm was in the larva stage, in an egg about the size of a marble. It was all cut up & sent to pathology. I never got to see it:(
Permalink Reply by Marilyn on July 19, 2012 at 9:55pm
Beth this is so funny! I just looked to see where Edison was, a good friend of mine from HS used to live in Old Bridge! I've been there several times. She lives in Carteret now. We grew up in PA but I live in southern VA now. Small world:)
Permalink Reply by Beth Rosenthal on July 23, 2012 at 6:34am

Hi Marilyn. I wasn't lucky to find a doctor "close" by. I suffered severely for over a decade and it affected highschool, all of college, and my first few jobs. The internet wasn't around when my pain started in 1990, pain wasn't studied, and physicians preferred having my suffer in agony than treat me with the proper meds. My parents and I travelled all over the US in search of a good doctor. I had 2 procedures that didn't work and damaged my my eye. I was 2 months away from killing myself because of the pain and I only lasted that long b/c I would have broken my mom's heart. She was my only support system. This doctor saved my life. Please choose your words more carefully. Please note my compassion in regard to your headaches. I understand you want to feel better but, kindness goes a long way. 

Permalink Reply by Carey on July 23, 2012 at 11:14am
Hi Beth I am new to this site and I too had a long journey before I was diagnosed with a meningioma - I'm checking out this site for friends and support as I have none at this time. I am a 3 year Meningioma survivor
Permalink Reply by Marilyn on July 23, 2012 at 5:00pm
Hi Carey & welcome:) my name is Marilyn & I'm new too.
Beth I' m sorry u took what I said the wrong way. I meant that that the Dr u found that saved your live is only an hour or so away. Not in Ca,or Fl,or someplace hours away. Even though it took yrs to find him/her & a life that no one but somebody else who has had a craniotomy would begin to understand. At least this Dr that has helped u so much is
close by enough for u to see when needed. Again I'm sorry. You are so lucky to have your Mother for support. I was grown & moved away when it happens to me. I have my husband, but it's not the same as my mommy. My mom & dad did come here for the surgery. Thankfully we have cell phones & Skype now. But I get so tired of Drs, my husband,etc just not believing that I have a headache EVERY day. I saw a new neurologist 3 Wks ago. She told me I didn't have screws in my head ( I have 6) gave me new meds that made me cry & not want to live any more. I stopped taking them after 5 days before I became suicidal.
We all have been through something nobody else understands. We need to be there for each other. I'm sorry
Permalink Reply by Beth Rosenthal on July 24, 2012 at 6:21am

Marilyn, I appreciate your apology and I know you didn't mean to offend me. However, I don't feel your really thinking about my situation or digesting what I shared with you. Yes, in ways I was fortunate. But you are. There was no support system for me. You are lucky that this site is here for you. No one was there for me. Not my middle school (when I was diagnosed), not my Hebrew School, not my dance school and they still don't care about me or IJB. My dad wasn't there in the ways he should have been and my family never really followed my journey. I had 1 friend that came to visit me. I was 11. No one cared that my dreams were ruined. I could never continue my gymnastics and dance. You are lucky you have your husband. Do you think it's easy dating with bad balance, hearing, chronic pain, etc? I'm 38 and am on disability. I never had a career, was very ill for 12 years that I can barely remember, and more. I just want you to be there for me, too, and take in what I'm writing. Please stop telling me how lucky I am. 

We all have serious issues and that is why IJB is here. 

Permalink Reply by Beth Rosenthal on July 24, 2012 at 6:55am

Hi Carey! You've come to the right place.  Please let me know if there's anything I can help you with or if you have questions. 

Permalink Reply by Marilyn on July 24, 2012 at 11:03pm
Beth,
I never said u were lucky, none of us have been lucky. My craniotomy was 18 yrs ago. I thought the point of this site was to help each other. I get enough negativity from doctors, my husband( that I married 4 yrs after my craniotomy ) & people around me. Notice I didn't say family or friends I dont have any within 500 miles. Which equals no support .i have only had internet for 2 yrs. I thought I had found people with proplems like mine & a place to talk about them. Not someplace I had to watch every word I said because somebody was going to take every word I said & twist it & take it the wrong way. I am not some evil monster why does the world hate me? Why did God do this to me? It's just not fair. This is the 1 place I thought I would b accepted for me. & I'm not even good enough here
Permalink Reply by Beth Rosenthal on July 25, 2012 at 4:24pm

Marilyn, the internet connects all types of people and we are all different. We all take things differently because that's what we know. I don't know the context of your words without hearing you. I needed to express how your words angered me. You wrote several times that I'm lucky ( in both comments) and it annoyed me. Just because we both have tumors doesn't mean we are going to be best friends.

I want you to feel supported here but, telling members how lucky they are is infuriating to me. I shared with you about my nerve pain, one of the worst pains known to man, and you never mentioned it. And I shared how there was no one there for me and you tell me how lucky I was to have my mom. I felt I shouldn't have responded because you don't pay attention to my words.

I want you to get whatever you can from itsjustbenign. I'm sorry for upsetting you. You are good enough; we all need to choose words carefully and to be thoughtful.

Permalink Reply by Ann Manzi on July 26, 2012 at 2:56pm

Beth, Your journey has been much longer than mine and so very different but we still share the same feelings depending on the day. I try to stay positive but there are trials and tribulations..... I don't physically feel great but always grateful. I met you at the survivors tent that I volunteered at the Phila Race for Hope last November. Thanks to you, so many have the opportunity to find support and know others in our situation understand. You have made such an impact for so many... ann

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