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Thread: holiday time

  1. #11
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    Mama2005,

    I am so sorry that you feel this way, I think your family will understand and if they see your changes at least they wont be talking amongst themselves about how you don't look sick.
    We all know how we hate those words. I know that sentence about doesn't sound very good, but I come from a very large family and I know that is how they would think. Some of my brothers even like to tease me a little about it, but I know that it is all in fun and they really are not bothered one way or the other on how I look. They all care for and love you.

    My thoughts for you are very simple.....and I really think you should go.
    You said that you keep them updated via email, so the next email just let them know about the nose and the other things and take a picture, like Jolanta said, and send it to them in the email and tell them that this is the new you and you are looking forward to seeing them at Christmas time. (fore warn them, so to speak).
    I think you will be fine and will have a wonderful time. If not, pop on over to Australia and we will show you a good time (and you can smack me for telling you to go).

    Best of luck with your decision
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  2. #12
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    Thank you all and al thank you being honest it helps. You all have given me a lot to think about and yes I have not came to terms with my nose but I know it will get easier. I am hoping by febuary or March I will have reconstruction surgery to help me back to myself. I think about my kids and what they miss but then I also remeber my daughter asking me not to come t her school anymore because the kids in her class made fun of my nose and again how to explain to a youngster that can't understand so I feel sooo bad that my baby is hurt by what others think about me. Thanks guys and I know it gets easier and that I will make the best decision its just going to be a hard decision. Again thank you all for hearing me whine and hearing my worries.

  3. #13
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    Mama, a big hug to you and your little ones. This is so tough on the children, acceptance is such a big thing in school. I hope you keep up your spirits and "it too shall pass"
    Jolanta

  4. #14
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    Quote Originally Posted by mama2005 View Post
    Thank you all for the advise. I don't isolate myself Al from the general public just from my family. I have always been seen as the strong person. I never show emotions and I fear the questions because I don't let my family and friends (other than you all) know that I am scared to think of what may come in the future with this disease. I don't talk to anyone about the disease because they won't be able to understand and when I first got diagnosised people who knew about the disease would come and tell me how sorry they were that it wasn't curable and would treat me as I was dying, so I gave up explaining it and just rather keep to myself. I have not prepared my family for the physical changes (saddle nose and hearing aids) so I am guessing it will be a big shock to them and my nose is a major self issue. I have not directly looked in the mirror over six months because I am that scared of what it has done to me and I know that it is fixable but to face my family and to explain to them what this disease has done to me and not become emotional is almost impossible. I know that my family will always love me but I am not sure what I am going to do yet. I will keep you all updated and agian thank you for your wisdom.

    um...did I write this. This is how i have dealt with wegs for the last ten years. Feel free to pm me anytime if you want to disscuss the ups and downs of dealing this way.
    lightning crashes
    leigh

  5. #15
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    Hi Mama! I love your name, your kids must mean the world to you! I know how you feel, I have the most wonderful daughter in the world. Before I was diagnosed my daughter came home from school one day and said "Mom my friends think you're a pretty mom, you don't look like an old mother." That was soooo sweet! Not too long after that I got very sick and did not look anything like I did then.

    It was very very hard because my daughter is very active and I had to go to Prom, she was a Home Coming Candidate, and a million other things. She won Miss Pine City Princess and was in countless parades and community events. All the other families and having pictures taken to remember these wonderful events forever. I was and still am sick about it everytime I think about it. I want beautful pictures to display in my home of my daughters priceless experieinces that we will never get to re-live.

    The fact is that we don't have these pictures, never will. BUT I do have a few pictures, I dont look like that pretty momma, I don't even recognize myself. One of the other Princesses moms said to me, "Kami you are here that is what is what is important and you are still beautiful! You may not think so but everyone else does." I had no hair, 50 pounds heavier, could hardly walk. I think she was lying to me.

    The fact is that I am still her mom and I love her and she loves me a lot and we are lucky to have each other. I am so very thankful that I was alive to experience all these things and to be there for her and with her..

    It was hard but I am glad that I have a couple of photos from those events of her and I because nothing had changed between us and we experienced those things together. It is almost 2 years since I was diagnosed and I am starting to look a little more like I used to, way better than I did when we took those pictures. Now I look back at those pictures almost 2 years later and say "WOW AM I LUKCY TO BE HERE, LOOK WHERE I"VE COME FROM!" I do know if I'll ever get back to normal but if I do I am going to have a professional picture done of the two us to keep!

    I know this isn't the question that you asked but maybe it helped a little. I don't think any of us likes how WG has changed us on the outside but remember we are still the same great people on the inside and your family loves you! I doubt that you would think less of someone in your family if the situation were reversed. Whatever decision you make will be the best for you and your family. Good luck with your decision! Love and prayers, Kami

  6. #16
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    Hello Mama ! I began with symptoms of WG the first of 07 and wasn't diagnoised until Jan. 08 and as all of the Doctors visits and treatments began I started to call and talk with my mother 2 and 3 times a week. We had always talked and visted when we could but it just seemed to be more important when all of this began. As it turned out my Mom was diagnoised with stage 4 lung cancer in April of 2010 and she passed away on June 3, 2010. It really means a lot to me now that we had a really special time together before she passed and this crazy ugly disease is what brought us together sooner than her getting sick. I wouldn't take anything for the extra time that we gained before she passed and I made sure that every time that I talked with her that she knew that I Loved her.
    I'm just trying to say not to let the WG stop you from seeing your family and have regrets later that you didn't get to give that hug to are tell one of them that you loved them.

  7. #17
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    ok all I have decided to suck it up ad go to the gatherings. I have took advise from you guys and I hope all will go well. I sent out a email informing my family that with the wg i now have saddle nose deformity along with it I took a picture which was the hardest thing for me to do. I have spent the last hour trying to tell myself it will be ok. anyway i got gutsy enough and finally sent it out to family members and i also posted the pic in my album. I know I look bad but I am thinking that I have to get use to it before It will get better. thanks all for your support.

  8. #18
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    Mama, I'm proud of you. That took a lot of courage!

    If a family member had the saddle nose and not you, how would you feel about them?

  9. #19
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    Ok is it bad of me to want to fore go the big christmas tree and just put a little one out...It will most likely be just me and my nine yrs old son to enjoy it and it just does not feel like christmas with everything going one....ughh I feel like scrooge
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!

  10. #20
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    Yay! I'm proud of you too Mama!
    ~ Chris ~
    (Female )

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