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Comment by Beth Rosenthal on January 27, 2011 at 8:57pm

I’ve been down lately, not depressed, but not happy. Since I was diagnosed at 11 and was severly ill with trigeminal neuralgia pain for 12 years, I missed a lot of school. I couldn’t continue my education because I couldn’t focus with my pain. Finally, I’m being treated and my pain is relatively stable, but now I’m obsessed with finding a career and trying to make my life within the normal range. 

My family is very educated and all have good and lucrative jobs, so it’s really difficult watching everyone make a comfortable salary, while I’m on disability and basically in poverty. I’m happy for them, but no one discusses how I might be feeling.

I feel really cheated out of life. My education and career were affected. I’m never going to biologically have children. I can’t really save for retirement b/c I’m on disability. 

Although we’ve all connected, I’ve yet to meet someone young who also has lost so much.

It’s wonderful that we can share our feelings. I guess I wish that I was able to live a bit before my diagnosis. Getting diagnosed when you’re in the beginning of 6th grade just doesn’t feel fair. 

Comment by Terry Guy on January 23, 2011 at 12:12pm

Bonnie, Linda and Debbie,

Thank you all for the kind words.It helps to know that someone is "listening" and cares. Why is it so much easier to write to a stranger than to talk face to face to someone close, a family member or an old friend?

The saying that "people must walk in your shoes" to be truly able to not only understand but feel what we really feel shows to be accurate again and again.

I believe loosing my job after 13 1/2 years in one single place due to new corporation reorganization, added to the feeling of being stuck, incapable of finding my way back to whom I really am. I am reluctant to go places on my own, as I need someone else to be with me to help me define who I am. Sounds strange? Yes, it is!

I know that these are signs of depression. My long time primary Dr. tried to help me and put me on Zoloft 50mg. When it did not help he increased the doze to 100mg, but the side effects were worse: confusion, slow thinking, memory deficiency. Then he decided that he wants me "back to who I was" and took me off it, without putting me on anything else. For the job I held I needed to have a clear mind, to be a problem solver, planner, organizer, educator, etc.

What I really want now is to retire and be close to my children and grandchildren. The incessant question is now: what will tomorrow bring? I try to be positive, but is hard. How many more years I will be still capable to enjoy my kids? I have 3. 2  live out of country and I get to see them once a year. I feel I already lost so much time being far from them.

I will stop for now. I don't want to bore you with my lamentation.

A BIG HUG TO EACH AND EVERYONE OF YOU!!!

It's good to know that we have our own support system who is here for us.

Thanks Beth for putting all that up for us.

Comment by Debbie Higgins on January 22, 2011 at 8:55pm

Terry,

I can so totally relate to what you are feeling! I have a meningioma that I had surgery on Nov. 2009. Could not remove all of it, because it is on a major blood vessel. I had 30 radiation treatments. I have vision issues, migraines and some memory issues but they are improving.  I have had and still have so many of your same feelings.

I am tired, tired, tired. Frustrated that I cannot do all I want to do. And I hate to complain, because it could have been so much worse. But I look in the mirror and think,"who is that person?"  I like your analogy to a broken dish. That is the best I have heard to try to describe the feelings.

I too have a wonderful husband and supportive children. They have their own lives to live, school, work. I hate to bother them; they have already done so much. But you HAVE to find a way to share how you feel with someone. My husband has said, I can't help you if you don't tell me what you need or how you feel. But it is so hard. I am not used to having to ask for help. I don't want any pity. I just want to feel like me.

Please know you are not alone. I know that just knowing other people are feeling the same has made me feel like I am not so crazy. Take care and I hope your days get better and you can find a way to get some of this off your chest. I think it will help you.

Debbie

Comment by Linda Wilson on January 22, 2011 at 9:41am

Terry,

I'm sorry also my heartfelt prayers go out to you, Bonnie is one of the best friends to have in you're corner.  She is willing to chat with you anytime.  We all are hesiten to share but it really does good to get ideas from others who have gone through this.  I learning to accept my life as it is now sometimes it feels as if I'm not working hard enough but I'm doing the best I can. So the best advise to you would be hang in there and tomorrow is a new day with no mistakes in it.

Comment by Bonnie on January 20, 2011 at 8:13pm

Hi Terry,

I’m so sorry for how you are feeling and what you are dealing with.  But just know that your feelings are normal – we’ve all been through and/or are going through what you describe.  This is due to the tumor(s) still there and/or the treatment and side effects.  It takes time (sometimes many months to years) for our brains to heal following treatment.  Feeling tired, depressed, and anxious are very common. 

 

Lifestyle changes help – accommodating yourself as you heal – sleeping/resting as needed, not trying to do too much, doing something special for yourself, doing things you enjoy, music, uplifting reading, getting outdoors, light exercise, yoga, trying something new, looking for the blessings in your life or focusing on what you are grateful for – have been suggested, used by IJB members.

 

In addition, sometimes these tumors cause imbalances in “brain chemicals” and a medication may be able to help with that.  Talking to your doctor is suggested if you have tried other measures and you still feel anxious and depressed.

 

I understand your concern regarding how much to share (privacy concerns).  At first I was worried about privacy (when I first joined online support communities) – I wouldn’t even join/use Facebook.  But I found that when I connected with someone going through some similar issues, talking with them really helps.  I have also found that trying to lend support and help others helps me.

 

Now I try to take a sensible approach – online I protect my personal identification info, but am less concerned that someone knows I had a meningioma, that I am disabled, that I have seizures, etc.  I share with other BT survivors via the online communities and am also on Facebook and connect with BT survivors and with other Christ Followers – I have received an amazing amount of support and love.  And the same for my in-person friends and coworkers – I’m pretty upfront about this when asked about my BT.

 

I think that you have to decide what you are comfortable with sharing.  Start small and see how you feel and how it goes.  You’ve taken the 1^st step and joined IJB, and now shared here, which is a great start.  You can also post questions – either in the groups section or on the forum (start a discussion) – these would be ways of learning what you need to know without having to provide too much info.  And, you can talk to me and others one-on-one via a message.

 

Finally, be joyful you are here and have a supportive hubbie who loves you, and children, too.  I think you should consider sharing with them some of what you are dealing with.  When some of my closest family and friends did not share their concerns (health & otherwise) with me until years later, I was very hurt and felt they didn’t trust me enough to share.  People especially family and friends are there to give you support – they want to because they love you – so do not be afraid to share.

 

Please hang in there and take care.  Sending you wishes and prayers for peace, healing, and hope.

((HUGS))….Bonnie

Comment by Terry Guy on January 19, 2011 at 8:02am

I'm scared, depressed, angry and totally lacking energy. I'm sick and tired of my self feeling like that. I know that's not "me", but I can't help it. I really NEED this support group; however, I don't even know where to start. My privacy is important to me, so how can I open and free myself of all the things that are so heavy on my chest? Sometimes I feel like a broken dish, who nobody needs anymore. Don't understand me wrong, I have an extremely supportive husband, tree wonderful supportive children, who I don't want to bother too much with my issues. When they ask me "what's new" I always answer "everything is peachy" and they accept my answer. But then, my husband goes to work and I am all by myself...My kids are far and they have their own families to care for.
> OK, that's all for now. The story is long, and I go to prepare dinner for my hubby.
> By the way...
> In March 2009 a MRI showed that I have 2 meningiomas. The big one is located in the cavernous sinus and can't be removed by surgery. I ended up having GK for the small one and IMRT for the big one. I finished radiation in Sept 2009. I have some vision, memory and areas of cognition problems.
------------

Comment by Lisa Turner on January 18, 2011 at 11:39am

Hi Becky and all... I am seven months over the surgery, in fact I have my six month MRI next week and it is making me feel quite anxious wondering if all will be alright.  I am on prozac 20 ml, and it does not keep things hidden away but just kind of takes the edge off of the worry..... and anxiety.  I hope meds kick in soon and you get some relief.  Lisa   ( contact me anytime to chat)

Comment by Beth Rosenthal on January 18, 2011 at 9:10am

Hi Becky, I get a lot of anxiety. Not meltdown anxiety, just constant in-me anxiety. I’ve called 911 on more than one occasion because I thought that I was dying. I left the hospital once treating my side-effects from the tumor and caught pneumonia in both lungs and for years I was paranoid about catching it again. I tried biofeedback breathing for it & it worked. I think that I fear the future, now that things are good for me. I’m on lexapro 20 mg. I’ve been on it a while and my doc thinks that I don’t need to up it. I think that anxiety for us is natural. We haven’t been alive long enough to have wonderful/exciting events impact us. But we know and understand bad. So it’s normal to feel like you’re feeling. 

I need to get going but, be kind to yourself. You’ve had a lot going on. 

Comment by Becky on January 17, 2011 at 11:22pm

Hello all. So I went to see my neuro-oncologist today. Everything in my brain is good and stable, but I was started on Celexa to help treat anxiety/depression. It's been very stressful since I finished chemo; while I was on it, I was at least being proactive. Now I feel like I have this constant thing hanging over my head that I could get worse. I'm having trouble looking forward to events because I'm afraid everything will get worse and I'll just end up disappointed. I've had multiple melt downs in the past few weeks and at times just want something that will knock me out so I don't have to feel like that anymore and could just sleep through my breakdowns. Basically, I'm just curious if anyone else has used Celexa (Citalopram) and if it worked. I'm on a low dose, 10 mg a day, but I'm also pretty small, though I'm not sure if it's by weight. I was told it would take about a month to "kick in." I really hope it works, because I'm so over all of this.

Comment by Peggy Card on December 13, 2010 at 4:15pm

Sorry, very wordy today.  To Alice...I had a wasband at the time of my illness.  Unfortunately, he decided I was well enough at year two to stop paying my health insurance.  I took him to court and the judge said he had been more than nice to me so he agreed he didn't have to pay it anymore.  I was devastated.  Make sure you protect yourself and research you options for a time when he is even more of a wasband then he is now.

Financially independent?  What is that Beth.  Honey, I have been working my butt off since I was 18, have had two husbands and am still not financially independent.  Just when I finish paying off one round of medical bills something else happens.  Accept the help that is offered you and just keep doing your best.  That's all you can ask of yourself.  I borrowed money from my Dad earlier this year and I am a grandmother.  Its frustrating I know but you didn't ask to have a brain tumor.  You didn't do anything to make this happen and there was nothing you could have done to prevent it.  So, keep trying, keep searching but don't be to hard on yourself.

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