ARRRRRRRRRRHHHHHH!!!!!!!

[luverofrogs]

Sorry, but I needed to get that out.  I'm getting closer to answers and am finding that some people's recent idea of being supportive is upsetting.  I got tons of well meaning advice from casual friends that I just need to change my diet.  I tried very hard to just take it for what it was, well intentioned advice.  I just got off the phone with my sister who told me that I shouldn't think about it so much and that "obsessing about it isn't going to do you any good," to not think about the bad stuff...a whole lot of blah,blah blah..and basically to just get over it and wait and see what happens.  I have to be her rock for every little thing, and some of it has been a bit crazy over the years what she has expected from me.  I have dealth with whatever this is for years and I'm at a point where I'm closer to getting answers and she treats me like I'm whining about stubbing my toe.  Whatever this is, it's kicking my butt lately.  It's a little hard not to think about finally getting a diagnosis and treatment for it when it's currently controlling my life.  I was a little excited and a little scared because I just got my MRI scheduled.  I, foolishly apparently, thought I could share my thoughts with her.  I'm sorry, but right now, this is at the forefront of my mind.  I'm on an emotional roller coaster right now and I'm sorry if this is the biggest concern in my life right now.  I'm caught at the moment between anger at what she just said to me after all the support and time I've had to give her over all kinds of things to wanting to bawl my head off:***(.  I guess I should go cook dinner.  THanks for listening.

[luverofrogs]

Thank you all for the support:O).  Quix, you put a lot of my feelings into perfect words.  I had my MRI yesterday and it didn't bother me at all like people warned me about.  I'm working now on getting the neuropsychological exam scheduled.  Then I can have my follow-up with my current neuro.  I just noticed on the website that he has MS listed as his speciality.  Maybe he'll be able to help me.  I'm very worried that the MRI will be perfectly normal and leave me out of further options.  I guess we'll just have to see what happens.  If the tests he ordered do not show anything, I'm supposed to see a psychiatrist again because my primary dr said if the neuro's tests come back normal, that's where I have to go.  She still is focused on it being psychological.  I wish this process wasn't so dragged out.  It's hard to hurry up and wait when your health is on the line, but since I have no choice, I'll just have to wait:o).

[pennst8r]

Sorry to admit, I was the one who brought up that d--- book. Someone at work had dopied pages on MS, leg spasms and optic neuritis to "help" me. Some of the things that were on the same pages w/ the info she meant for me were even more outrageous!

Penn

[Quixotic1]

Hi, I just wanted to say a little something to console you on this kind of insensitivity.  It is awful when those nearest to us don't understand what we are going through.  Clearly your sister would be "death-bedding it" if she had half your symptoms.  As much as we would like to see the concern returned when we have listened to someone who is devastated by everything, it often just doesn't happen.  Self-absorbed people remain self-absorbed.  We still love them, but we have to know that they won't necessarily "be there" for us.

I think you have thought it through very well, but it doesn't take the sting out of the comments.

As for you being to focused on the diagnosis...uh....what else can you be when you have an unknown enemy robbing you of function and effectiveness?  Things really are easier after diagnosis.  There is something to tell people, there is a plan, you can finally picture moving ahead.  Being ill without knowing why keeps you at a dead stop.  BTW - I understand the excitement of schedualing the test that might given you the answers!!!

As for the advice that the proper diet could take care of all of this.  It is quite a simplistic view of life.  There is little to say to those people. You're right, a simple thank you and change the subject.

Sally - There is a book circulating on how we have brought all of our ills upon ourselves.  Someone brought it up here some time ago.  I forget what the psychological problem causing MS is, but it was a riot - and almost caused a riot on the forum.  If we could have found the author, I'm sure she would have been lynched!

Luver - my sister had a big Pixie Frog.  Said it was like holding an animal with no bones, just an interior of JELLO.

Quix

[luverofrogs]

Thank you everyone:o).  After calming down and talking to my husband, my dad and some close friends I've simmered down.  My sister has done things like this to me many times and I'm sure this won't be the last.  I *know that there is something very seriously wrong with me and I know that I have good reason to feel the way that I do.  She said that my neuro went to medical school so he must know what he's doing....well, that may be true, but I've been blown off so many times before, misdiagnosed and flat out lied to by doctors before that I do go back and forth on beleiving in my doctors.  When I found out that the orders in my chart didn't say what the dr told me he was looking for threw me for a loop and I was having a moment of "oh no, not again."   Since then, I have stepped back and run through it all in my mind again and I think I understand things better.  I think after thinking about it for awhile, that it's like some other ladies on here have said that the drs write other things on the orders sometimes so that MS isn't a red flag for insurance or whatever until it absolutely has to be.  That makes sense to me.  The nurse explained that MS is exactly what the dr is looking for.  I don't understand why the spine isn't included in the MRI scan, but maybe he will do that later if he feels it necessary.  He does seem to really care and want to help me.  I am once again optimistic.  Casual friends giving diet and health advice doesn't really bother me that much since I know that they are truly trying to help and are very well intentioned.  For my own sister who has seen with her own eyes what a previous attack did to me, to treat me like she did just really, really hurt especially when she *knew it and just said she had to go and hung up.  I live very far away, so I will just not talk to her until I am ready.  

As for frogs, I do adore them:o).  I had a pet frog for around 6 years and I used to collect tadpoles very spring and raise them into frogs in an aquarium before releasing them outside.  I've rescued countless tree frogs from my cats, pulled off the side of the road when I found a stow away and carried it to safety and even chased one around a parking lot with help from a store clerk and took it a good distance to the grassy area surrounding a drainage pond.  I also collect frogs...coffee cups, ceramics, stuffed animal, keychain....that kind of thing:o).

[LLWB]

It is so hard when a close family member or friend is so insensitive to do that. Sometimes you have to distance yourself for awhile, so that their negative thoughts don't influence you. I had one friend I finally let go of, because if I had a cold, she had pneumonia. If I stubbed my toe, she fell down.......You get the idea. I thik it makes some people feel like they are more the center of attention or more important. Hang in there, I'm glad you are getting close to answers, and hopefully meds that will help you cope with this condition. Happy that things are getting closer for you.     Maggie

PS I think frogs are cute!

[Super_sally888]

Hi,

Yes, it does happen.  My sisters, from the very little I've told them, beleive that my health issues would be ok if I just change my diet and get more healthy.

Now the latest is that my health issues are caused solely by my not being content with where I am in life and if I would be true to my real desires they would all be fixed / healed.  My occular migraines are caused by my inability or refusal to look forwards at where I want to or should be going....

And my sisters are paying a 'body talk' therapist to tell me these things and heal my energy - and she can do it remotely though she is in Australia and I am in Philippines!   Very new age.  No scientific explanations, but they are totally convinced, so I am just letting them.  My relationship with them is more important, and it can't harm anything except maybe my wallet (and that won't be very much).

I think how we take this depends on the person who's giving the advice.  If it's someone close I just let them give the advice and thank them and let them know I'll consider and see how I can incorporate it.

If it's someone I don't really know, I just say thanks and change the topic. But actually I try not to let outside people know.  In fact I am keeping this 'secret' from even peoplee close to me.  After all I don't look as if I have health issues, so surely I don't have health issues.

Can't let people who don't really know what's going on affect me.

Easy said, but not so easy to do.  Let it all out here! We understand.

Sally

[pennst8r]

We're here to listen to rants, raves and even arrrrrrrrrrrrrrrrrrrrrrrrhhhhhhhhhh's! I think most of us have received this hopefully well intended advice. I had someone at work give me "validations" to repeat to "Cure" me since MS is caused by hard heartedness, stubbornness and all sorts of other utter **** like that.

I feel your pain. Vent away...but hang in there. You're not nuts and you're not alone

Penn