I lost my smile today !!!
January 6, 2005 at 3:05 pm #2819alexandra7Participant
Ok . Here we are in 2005 . It’s 2 years since my life has changed radically. My dad had a complicated brain surgery and in the same year I found out that I have a strange anaemia that looks like MDS . When I look at my life before and after this events I don’t know why but I start to cry . My hole life has changed . I did not ask for this . I don’t want it . It’s like a bad dream and I can’t wake up .I ask myself sometimes if I did something so wrong to diserve all this . I should be thankfull that up to now my only treatemnt is B6 . Yes it helps but I will never be normal and this scares me so much . I thought that this was something that will go away but I can see that anything I do can’t take it all away .Reading things about MDS makes me understand that there is no escape . Sometimes I tend to think that I have made peace with myself and with the situation but a question keeps coming up WHY did it have to happen ?
This is how I feel and I’m sorry I could not share good thoughts with you today. MAybe next time . AlexaJanuary 6, 2005 at 3:13 pm #2820AprilMember
Alexa ~ You can share your thoughts anytime!!! Regardless if they are good or bad. Sometimes posting something like this is more helpful to you than you think. To just be able to vent and not be judged is great! Never feel sorry for sharing your thoughts. We will be praying that the Lord will help you thru this. I know that sometimes it’s probably hard to understand why God has put this on you and you probably feel like he has let you down. But try to keep your spirit up and just live one day at a time. If you need anything, I will always be here. If it is to vent, cry, whatever..just let me know…January 6, 2005 at 3:43 pm #2821CarrieMember
I was in your place just recently after finding out about my father’s MDS. Day by day, things got easier to deal with and it will for you.
Your feelings are normal so please don’t be afraid to share them.
CarrieJanuary 6, 2005 at 4:09 pm #2822shirlsgirlMember
Alexa, I agree with April and Carrie please feel free to vent anytime. You are among friends, please take care and I hope you feel better soon. JodyJanuary 6, 2005 at 4:37 pm #2823TerriMember
Alexa, We all are where you are at some point in our life and dealing with this disease. This is the right place to vent and to find support. I hope tomorrow brings back your smile,
God Bless youJanuary 6, 2005 at 8:32 pm #2824czaringMember
Alexa – I don’t have this stuff – my mom does. So I don’t know what it feels like to be in your shoes … at least not quite. What my 46 years have taught me though – and it is ONLY MY OPINION – is that the WHOLE POINT of life and living is to LOVE …. and to find your way through those events (and we all have them – to one degree or another – for one reason or another) where you find yourself asking those questions “why me” or “what did I do to deserve this”. It’s hard .. but if you can learn to think that asking and facing and working through those questions is really the magic of being given life. Everybody finds different answers in different ways. But those who find their way to the positive answers … even in the face of terrible circumstances …. the POSITIVE way to look at it … the POSITIVE way to deal with it …. the way to give to others what you have learned in your own life. It’s important to ask yourself what you may have done to deserve this … that’s part of figuring yourself out … but my guess is the answer really is “ABSOLUTELY NOTHING”!! My guess is you are really a good person who has done the best they can with what they have. That’s all any of us can do. Know that you’re not really alone – ever. And try to smile again!! That alone will make you feel better … even if you have to force it at first.January 6, 2005 at 8:44 pm #2825CarrieMember
I hope this isn’t obnoxious but here are some smiles for you:January 7, 2005 at 1:46 pm #2826B. GreeneMember
I think all of us probably share your thoughts at some time. I have to work really hard to stop the horribly bitter thoughts I have about good people who have to cope with something like this and the utter scumbags of the world who never seem to have anything happen to them. Bottom line I guess there just isn’t any answer and we have to keep muddling our way through the best we can. As everyone on the panel well knows I certainly have blown my top here a time or two. Ha. Write when you need to vent we all understand and we can’t really let down in front of our family. BarbraJanuary 8, 2005 at 1:43 am #2827KristySMember
I am the mother of a 14 year old girl who found out at age 12 that she had a “wierd anemia” like MDS. Right now they are calling it “refractory anemia” because like you she has no blasts, but because of her young age and normal chromosomes, they are reluctant to say full blown MDS. MD Anderson is willing to try a monoclonal antibody treatment on her before ATG or anything more severe. I will keep you posted how it works. I understand your feelings of depression because we have lived that for the last 2 years. It is very difficult to have a serious medical condition that the doctors know so little about. Feel free to email me anytime.January 8, 2005 at 6:41 am #2828tahoedonnerMember
As B. Greene indicated, probably all of us who get this diagnosis ask the same questions.
My reaction to being told that I had MDS (RAEB) and 6 to 18 months to live changed my life. I could have died of something else the day I was told , but I didn’t. I had and still have the time to put everything in order. I bought a grave,arranged for my funeral, wrote my obituary,started my biography, checked our trust with our attorney,took a trip to New Mexico including Sanctuario de Chaymyo, the “Lourdes of America”, started to remodel a smaller home and to sell the one we have outgrown, talked with our children about my condition and told them how much I love them, provided for the orderly transition of my elective office, and did ever so many other things that so many of my friends who died all too soon and all too quickly and all to painfully of other things never had the chance to do.
Then I got the news that my MDS had gone into remission and after four month still is in remission. Talk about shifting gears! Someone said that it is a lot easier to die than it is to live. I’m not too sure about that one, but my outlook on life has sure changed for the better knowing that things could and probably will change once again. Hope and pray for the best and use the time you have well!
Best wishes!January 8, 2005 at 12:37 pm #2829mommachkateMember
Hi Alexa, I am so sorry you feel so sad, but I understand you fully. You are so young, there is so many different treatment, you could get better so soon. Try to think positiv. ( Easy to say, right?) I belive positiv thinking is winning half of the battle. Just went, and share your thoughts, we are here to listen. KateJanuary 9, 2005 at 2:35 am #2830czaringMember
Hey Alexa!! See??? I’ve seen you post to another young patient here … already finding a piece of the positive and sharing it with somebody else. That’s the good stuff – right there! That comes from your inner-strength and your ability to turn around from your low points and move back in a positive direction. Good for you! That takes a great deal. And you’ll find the way to do it when you need to. I hope you are feeling better than on January 6. You sound as if you may be.January 9, 2005 at 10:43 pm #2831KATHY1Member
Alexa, You can only feel what you feel. Don’t apologize it’s your right. We all have moments, hours, or days like that. This is a great place to unload. I’m sure it is very difficult but I truly believe a positive outlook and good spirits can be the best medicine. My mom lived with MDS for over seven years. I know it doesn’t sound like much but I do mean lived. Her illness did not stop her from doing whatever she wanted to do. She honestly lived until she died. I know you are much younger than she was but don’t forget there is much more that can be done at your age.
Wishing you all the best.
KathyJanuary 10, 2005 at 12:59 am #2832DonnaMember
What you have done Tahoedonner is something that all of us should do, because, you never know what can happen. You must feel such relief that everything is taken care of your family has nothing to worry about — it’s all done. Wish I could say the same. I’ve had a will stuck in my drawer forever — denial – will never happen to me. I will get to it. Sure don’t want my kids trying to figure out what to do – -it’s a awful feeling when we don’t know what our loved ones would’ve wanted, leads to lots of bickering too. Sorry — I’m rambling. Alexa — down days will come. Scream, yell whatever you have to do. The next day will be better, Emotions with any illness are up and down. Live each day! When you need to let emotions out. This is one place where I’m sure everyone understands.
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