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Rare diseases awareness month



  • DeepshikhaSharan
    DeepshikhaSharan Posts: 2,676 Level 5

    Thanks for the information!!!!!

  • Crimson_Dawn
    Crimson_Dawn Posts: 2,741 Level 5

    I don’t often read every post in an “off-topic” thread, but this is one major exception. There are a lot of people in the community now that I haven’t talked with and I had no idea you all went through these things. Y’all are definitely stronger people than I could ever think about being.

  • firebombmarkus
    firebombmarkus Posts: 13,110 Sweet Legend
    edited February 2020

    @Nat09 :

    @firebombmarkus, love the song, I hadn’t heard it before but what a great song for this thread 😊👍🏻

    The lyrics are perfect! The poet in me always hears the lyrics first 🤗 And these ones are giving me chills and I feel powerful. That's why I shared it with all of you, I want you to feel powerful too 🙏🏻❤️

  • firebombmarkus
    firebombmarkus Posts: 13,110 Sweet Legend
    edited February 2020

    You are such a sweetheart and you know we love you too 🥰 Never stop giving us laughs!

  • firebombmarkus
    firebombmarkus Posts: 13,110 Sweet Legend

    Thank you for taking the time to read it 🤗 Sometimes we forget that behind all these letters are actual persons. We all have a story and that's what makes it beautiful. I am sure you are a very strong human being, maybe you just don't know that. I think we don't even know how strong we are until we have to face something that requires strength and bravery.

  • Sofia1992
    Sofia1992 Posts: 2,526 Level 5
    edited February 2020

    Oh my...

    All of you stories everyone really touched my heart and teared me up a lot.

    It's really sad how much all of you suffered and how many battles you are still giving everyday.

    Also, it's sad that people out of real life are very mean and they don't understand and some of them even treated you so bad.

    All of you are so nice and very kindhearted deserved a better life than this .

    I wish I could be able to cure all your pain from your hearts and I know that my words will not be enough and never be enough but...but at least, I...I understand.

    How? Well, I lost my gradma from heart disease 16 years ago. Her death cause me so much pain because she was like a second mother for me and she was only 62 years old. And, still even after those years, I still miss her.

    And about the bullying part, I had been bullying too because I was so kind and always the easy target since noone supported me and stood in my side. The only way to survive from those bullies is to run away like the cat with the mouse.

    And...I...I...I have trouble with my anxiety. Unfortunately, I'm not brave and when I enter in new situations so sudden, I've got very nervous. I try all my best to handle it but it's not easy. I feel that my brain freezes and my heart beats a lot. The only thing can calm me in those sitiations is my favorite 80s music. When I heard it, I somehow calm.

    Also when I'm home after a hard day and play CCFS, I calm too and feel happy. Somehow, i feel calm when I play this game too.

    Anyway, all of you are so brave that you opened your hearts here.

    It''s my honor of meeting all of you and I hope to meet you and in real life too and in the future.

  • Glenn1972
    Glenn1972 Posts: 16,650 Pro Player 👑
    edited February 2020


  • firebombmarkus
    firebombmarkus Posts: 13,110 Sweet Legend

    Hi, there 🤗 @Sofia1992 You are such a dear soul ❤️ I am sorry about your grandma but I am sure she is your angel and she is taking care of you, as mine does for me 😊 As for the anxiety, you would be surprised how many people out there are struggling with it. I was one of them. It was so frightening that I couldn't enter any place with crowds. If I go to buy something I would first wait outside so I can enter the shop when no one is there. And here I am now, being an inspiration for people not only here but in real life too.

    My recommendation is to talk to a psychologist and eventually you will come up to the solution. It's mostly connected to the way we process the feelings, sometimes they are stuck and we can't let them go because our mind learned that kind of behavior pattern.

    Yes, we are all brave but you are too! You shared your story with us too! Thank you for being that brave 🙏🏻 Let love heal you 🥰

  • _Elsa_
    _Elsa_ Posts: 36,683 Sweet Legend

    Hi @Sofia1992 I totally understand the extent of your pain from losing your grandmother. My father passed 3 days before my 17th birthday and he was the love of my life. It's over 50 years and I still cry and miss him so very much. ((((hugs))))

  • Nat09
    Nat09 Posts: 12,561 Pro Player 👑

    My dear friend @Sofia1992, before I got ill I used to stress out about everything, I had a lot of anxiety, everything had to be planned and if something happened I had a backup plan (my youngest son is also the same, he’s 16 and takes medication for anxiety, it’s that bad) Only when I got sick and was making myself sicker wandering what’s going to happen to me in the future, if it’s this bad now what will I look like in 5 or 10 years. I saw a psychologist, she was wonderful, introduced me to meditation and it’s the best thing that happened to me, I had to learn that I couldn’t control everything, if I don’t have control over a situation then no use stressing over it. It was hard for me to learn that but I finally did. Anxiety is a hard battle but you can win this battle, you are stronger than you think, focus on your wins, you’ll get there.🥰

    I also want to let you know that words are enough, they cure the sadness, loneliness they can cheer you up when you’re down, they also take some pain away, if I’m really low, I like to watch comedy, anything that will make me laugh, it’s very good for the soul. All the well wishes, encouragement, they help so much more than you think, thank you so much for sharing your story.😊🥰🐰

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