Thanks so very much for all your kind and thoughful replies. I really appreciate it.
Magoo...yes, you're right, they would be there if I asked in a heartbeat. BTW, I'm 44, single, never married, no kids (though I've had a few long term relationships)...oh, and my name IRL is Rhonda too! And I think you're right, but it's easy to forget that it's hard for people who care about you to talk about such a devastating dx.
bmk1234...to further the above, yes, I think you're right, MS scares them and quite likely they don't know what to say or how to say it. As PwMS, we have been forced to deal with it, up close and personal...
Cece...yes, so true... I sometimes feel the need to "manage expectations" of my participation in events.
Bad Copy...Yes...I sometimes overhear little snippets that make me think that they really are paying attention, they just don't want to make a "big deal of it." I too wonder "what if" I don''t have CCSVI...but it's more a part of my denial fantasy where it turns out that it was only B12 deficiency or Lyme Disease....it aint' just a river ya know
ozarkcanoer...I totally agree..."I look so good!" And really I feel good too. Aside from the dastardly Avonex, I really have had an easy go of it so far (knocking on wood as I say that). I too had absolutely no idea what people with invisible diseases went through prior to my dx. PS...do you really canoe in the Ozarks? I bet it's incredible!
thornyrose...I'm so sorry that your mother is not supportive in a way you need her to be. From other posts you've made (the "loan" post in particular), it sounds as though she might be caught between wanting to supporting her daughter and concern about her inability to do so financially? I suppose what I'm saying is that she might be feeling guilty about your situation and her inability to assist given her limited resources?
Daisy...that's funny....but, as I said above...it ain't just a river
Thanks so much to you all for taking the time to respond to my post. It just occassionally hits me that it feels like those closest to me aren't paying attention to the "hugeness" of the potential of CCSVI for me. Last night it hit me and rather than post a snarky comment on FB, I chose to post here. I'm glad I did.
Hope (or since I outed myself already, Rhonda)