Replies to This Discussion

Permalink Reply by Kasey on July 28, 2009 at 12:00pm

Sorry to hear about your diagnosis. And I'm really sorry you can't get any support without people trying to convert you.

I don't know a whole lot about the problem, but feel free to talk here. That's what we're here for!

Permalink Reply by KDelphi on July 28, 2009 at 12:19pm

Thank you....I just "had it" last night when I went to a Meningioma site , everyone was praying for everyone else , and, ok, I guess, so I just tried to talk about the diagnosis (I am also diag with a demyelination syndrome and injuries from a motorcycle wreck, so I'm really scared here to "keep what I have left")...I keep getting. "do you pray"---I said, "no...and that makes it more scary, I guess, that there is no god"....the replies "WOW thats the problem then!! Prayer is very powerful! That is why you seem so sad!!!!!!!"

No, I have "no one" to "pray"
to!

i replied. "Nope dont think thats it!!! I think it might be the (Place my entire diagnostic report here) and the fact that I was going to go back to get a possible PhD this fall )...do you think that THAT could have anything to do with it?! If there was a "good god", neither one of us would be here and everyone would have health insurance instead of this horrible Medicaid! Do ya think? I'm obviously not inthe right place"

And then I found you guys...lol...thanks...help?

Permalink Reply by Jaume on August 5, 2009 at 7:29am

Life isn't fair, and (probably) will never be, and prayer is in no way a cure to this fundamental 'injustice'. And in many cases it only aggravates the problem. What about this?

Permalink Reply by KDelphi on August 8, 2009 at 1:51pm

Gawd! These people seem to think that they OWN their children--they do not. We all have a stake (and concern--most of us anyway) in the next generation and a right to take kids from people like this. Thats what I think anyway.

Now, dr says that, because of past surgeries for motorcycole wreck, (might make craniotomy more dangerous)he might recommend "watchful waiting"---that sounds good at first, but, wtf do I do for 6 mos?!! Help....

Permalink Reply by Jaume on August 8, 2009 at 3:17pm

You have my sympathy.

I don't know if this story will bring comfort to you, but I'll try anyway...

7 or 8 years ago, my boss decided to relocate our office. We had a lot of furniture to move, so he enlisted his son to help, and said son came with a few friends. One of them was a bald man in his mid or late 30s. This man looked like a cheerful person, often smiling and joking.

Later, while we were at a nearby restaurant for lunch, I told him about my own choice to shave my head and the feeling of freshness and freedom that goes with baldness. He jokingly replied he wasn't bald by choice but because of chemiotherapy.

This guy had terminal cancer, and, according to his doctors, about 1 year left to live. And what did he do? He bought a flashy sports car. He practiced a lot of extreme sports. He decided to fulfill all his dreams, and to live the life he always wanted to live.

And he told me: "Je ne me suis jamais autant marré de ma vie" (I never enjoyed my life so much).

Permalink Reply by KDelphi on August 8, 2009 at 4:47pm

I have thought of selling my house and buying a small boat (a REALLY small one!--cause the bike wreck took up so much of my money, despite insurance) and just taking it out and seeing what happens. I used to dive alot, and, if theyre not going to treat this damn thing, I might as well dive again!

Id be able to accept whatever happens alot more if I were at sea, anyway.

I have someone willling to go with me..but I worry I might not take risks if they were along....I am thinking about it. But, I do worry I will "think about it" until I no longer can....and then someone else will make the decision, even if I have instructed differently....I've seen it happen (with my dad, who died of brain cancer, but alot slower than he wouldve had to, if I had been able to enforce what I think wouldve been his wishes...)

Thanks for reply.

Permalink Reply by KDelphi on August 11, 2009 at 1:34am

Yes I do, on both counts...I did it after surgeries for a bad motorcycle wreck. My sister wqas on it, but, when I fought with her over removing life support from my father, during his last two wks, with brain cancer, I took her off and put my other sister on, then decided that they would fight too hard!!. My man is probably not going to do what I want , either.

A surgeon I had is on it now...he knows exactly how I feel...the attorney who wrote it up charged me nothing...peopel should know about this, youre right.

Thanks...

Hey, sorry about the pic, folks, I keep trying to upload the ones I have, but I think theyre too big---have to take another one and dont want to do it sick!! Actually I look like this guy...lol.

Permalink Reply by KDelphi on August 12, 2009 at 3:32pm

Yes, I am very lucky to have a surgeon at Cleveland Clinic who sees me, outside my Medicaid HMO (he does it for free...) We need alot more drs like that....Dr. James Church...lovely person.

Too bad he cant help with this,,,but no one can tells me how its really going to go, so I will just get on with things until I feel too bad...I'm pretty much ok now,,,,just headaches, blurred visiosn and tired...byt I'll never give up.

Single payere HR 676, folks!! US needs it (thanks for letting me -plug!)lol

Permalink Reply by KDelphi on August 20, 2009 at 12:32am

Thanks! I am in Dayton, Ohio...my Medicaid drs wont give me a thing...I guess it might get worse later, so I may have to put that off..I'm not really in pain , (tonite, I guess I should say)except headaches, and my Medicaid wont cover the stuff they want to give me for migraines....blurred vision is real off and on...I wish they would give me something for anxiety when I need it..sometimes late at night, its rough..

I may be in Cleveland, depending on what drs decide to do..i am sure not letting some non-bd certified dr down here pick around in my brain! Its hard when you have always relied on your brain, without any other kind of beliefs, you know? I always thought that, in the end, it would "take care of me" and make me delusional or something,,,not so far anyway...my memory is alittle shot, but might be from worrying...