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    Surgeon appointment canceled....AGAIN:(
    mindyj1971 posted:
    So, I've been counting down the days since my last appointment was canceled 2 weeks ago and don't ya know I got a call 45 minutes before my appointment today saying that my doc was called into another emergency:( I did not sleep at all last night....just so anxious to talk to the doc! The good news is that I don't have to wait 2 more weeks. They put me on his schedule for first thing Monday morning, but that is just gonna make a long weekend for me! I don't know why I am so worked up about this appointment. I did at least let his nurse know that I am having a horrible time coming off the steroids this time. I've had to restart it 3 times just to keep myself out of the hospital. Obviously, if I am having these issues, he is NOT going to rush in and do the colostomy reversal until I am a little more stable:( Oh well, I'm just gonna have to suck it up I guess. I will continue to take the prednisone until I see him on Monday.

    So frustrated today! GGGRRRRRRR:(

    Hope you are all having a better day/week than I am!

    Hugs to all-Mindy
    kaj2313 responded:
    Hang in there Mindy!! Will be thinking of you!
    jodi2125 replied to kaj2313's response:
    Im sorry mindy. I know youve been waiting for this appt forever, it seems anyway.. hope the weekend goes quick for you.
    rednewbie responded:
    Hang in there sweetie. I am know how much you are looking forward to just sit down and talk to you doc and know what the game plan is. You just want to get in your head what to expect so the "limbo" feeling is gone. That is completely understanding. I am in a similiar situation waiting for the decision from the SS hearing. I just want to know what the decision is, I am not looking for the paycheck I just want to know what my future holds. You can handle if you have to wait another month or two for the surgery, you just want to know. I will hold your hand, if you hold me.

    If I do not get my decision soon, I am afraid I will start mugging my mail lady!
    mindyj1971 replied to rednewbie's response:
    Thanks for all of your support, guys! It means the world to me!

    Gin, you always know how to make me laugh! Please don't mug the mail carrier....that is a federal offense! Of course, I would be there to bail you out in a heartbeat, so if the waiting gets the best of you....I'll be there!

    And you are right...I know that my surgeon is not gonna have some magical answer when I see him, I just want some kind of action plan. That's all! Even on the prednisone, I can feel some of the pain coming back in my stoma. Just like when I was hospitalized in April. I just want to try to do what I can to prevent another flippin' week in the hospital. I just don't know what the answer is gonna be. I can't be on the steroids forever....none of us can. Oh, how I wish I could, though. Never, ever thought I would say that!

    Hang in there, girl! Hopefully, all of this waiting will pay off for both of us!

    Big hugs, sweetie!
    rednewbie replied to mindyj1971's response:
    Doesn't this disease just blow??
    I swear even if I do everything right, about every 10 days I feel like I am sitting on the edge of an ER trip. Oh, alright.. as I write this I realize I do not do everything right. I might eat right (as per my crohns and strictures) but its impossible to get a nap everyday and not EVER get stressed. Doctor appointments and life in general prevents me from doing everything right; kids, husbands, and so on and so forth prevents me from getting the rest I really need.. But... I swear to you I eat like I am suppose to, and I get kicked in the butt about every 10 days now. I either have to spend about 48 hrs down or I push myself and then I hang on the edge of ER visit. This life can suck. The life of the disease.

    So, honey I know you just want the doctor to hold your hand for 5 little minutes and tell you what his thoughts are and what the game plan is. It seems so reasonable...Why is it so darn hard????

    Please keep me updated, and let me know how Monday goes. Hugs honey.
    mindyj1971 replied to rednewbie's response:
    Thanks, Gin! You are a sweetheart! And you are so right! About everything. We have to be bedridden for 2-3 days just to get one normal afternoon out of it! It is exhausting! I'm afraid to eat anymore because of the several strictures that I have. I just keep drinking my BOOST all day long. I've managed to keep some of my weight on, so hopefully that will mean something to the doc tomorrow. I was 106 the day of my colostomy in March and I am up to about 120 right now. I really thought it would be more because I have been on the steroids since the end of April, but, like I said I have been afraid to eat a whole lot. Oh well, wadda ya do?

    We just gotta keep on keepin' on!

    Gary is in the hospital again as of last night. Kidney stones....AGAIN!

    Talk soon!

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