Hi Sweetheart,
It has been a while and I am so sorry that I haven't kept in touch...you are a champ, a fighter, and a one-off miracle. You know all of this and so much more. your situation is unique and your surgeon (and mine) is a champ for having stuck by us until way past when others would have!
So sorry to hear that you have lost the 2nd k pouch, I was not up to date on things and haven't been home in years (about 5). I would love to see you on my next trip, whenever possible.
Yes, our families do not believe us, even after surgeries, they blame us for our problems, situation, and disease...they tell us that it can't be so bad, that we exaggerate, that we can do better or look ok so why are we complaining, they would love to lose weight so easily (yup, I got that one too as well as the, 'you are so lucky to have a handicapped sticker!' one...) they make me scream but never in public...how could we possibly know how hard their lives are with jobs, cars, kids and such...we are so egocentric! (yup, got that one too!)
They prefer to blame us rather than try to understand...I still get the ones telling me if only I would eat this or stop eating that I would be just fine...I'd like to strangle them but it isn't an option so I prefer to just not see them...so much easier!
Getting the EDS (Ehler's Danlos Syndrom) diagnosis helped with my doctors' reaction to me...They understand a bit faster although many haven't the foggiest idea what it is, to give them credit, some actually did read up on it and adjusted their treatments accordingly. It makes the way that they operate and the sutures or mesh repair that they use more efficient and much less dangerous.
Too bad Dr. C didn't find a way to make your valve work.
Our journey is a rough one, multiple surgeries do a number on us, ligaments, joints, guts...just too many to count and so few successes...they are tragic and yet you keep fighting the good fight...never give up, never give in!
Thank you for your rant, it may allow some people here a sort of relief, a bit of light into their lives, and hope, letting them know that they are not alone and that others are going through a similar journey...
Oh, sweetheart, write to me directly, you've got my address...for no other reason than to keep me posted on how things are going...on all levels.
Huge hugs from way over here...and hope for at least an acceptable life!
Sharon