Only You Can Understand

[silenceshhh 9]

Ive been on the site for sometime, watching, waiting and sometimes commenting. I went away because I got sad and even more frusterated. I have it in my head I am doing this, and that is that.

My problem stems because I have a somewhat rare genetic disorder that doesnt allow me to properly digest protien. I gained weight when i tried to ignore that i was different and did what i wanted. When a my genetics dieticians called me exstatic because there is this new wonderful drug study that is going that virtually eleminates by disorder by daily injections. So of course I was happy to jump on it and be paid to be a lab rat and eliminate this. It worked for me but i went through hell and back twice looked like i had the measles ( during a big measel out break in WI) I couldnt move for 2 months, i couldnt even clean myself in the shower, it was really bad and I was on steroids for about 4 months.

Anyways....Ive made it all through that, and there has been a lot of work on my part, the Dr.s, cordinators, and dieticians. They told me in the first part of the study there was no way I could do the sleeve for many reasons. But I am now in the 2nd leg of the study which is 3 years long, i think I am like 6-8 months in. I asked at the begining of this new study if I could now do it, and they still said no.

I have changed everything about the way I eat, I try to eat mostly veggies, fruit and meat. No processed foods.. Although I eat soo much better my weight hasnt changed. I am 5'2 and 235ish and I am SO OVER IT!

I was discouraged in the beginning cuz i found my healthcare didnt cover, but doing so much research and hearing about dr's in Mexico was uplifting.

Im so angry! dont get me wrong im thankful for what these wonderful doctors and staff have done but I just feel cheated. They said I could and now I cant.

I frequently check and look through all the post of people on their journey and it helps me to know that in a few years I can do this, hopefully. But I am so sad in the same because i just want it to be me..

Thanks for hearing, well reading my rant. Until next time..

-silenceshhh

[MegInNOLA 531]

I'm really sorry to hear about your frustrations. I totally understand why it would be difficult to not have the option of having the surgery. But with your particular condition, it kind of makes sense that your docs wouldn't necessarily want to remove any of your stomach--if you have a shortage of digestive enzymes, removing anything that might aid in the production or transport or appropriate application of those enzymes to the food you eat might result in even worse Protein digestion/absorption, and you don't need/want that.

Sounds like you're already making strides to improve your quality of life through improving your diet. I hope you and your doctors find a workable solution for both your Protein issue and your desire for weight loss. Best wishes to you.

[silenceshhh 9]

I now have to have 60-70 grams of Protein a day. Many people with my disorder have been banded. this being the better option I would like to go this route. Oi!