Rare diseases awareness month

Nat09

Thank you so much for the lovely message @wafercookieflippers it’s so important that everyone understand that they don’t have to suffer alone, you don’t have to share your story, we’re here for you 🥰🦓

firebombmarkus

@wafercookieflippers You are really an extraordinary being! I am kind, indeed, but you extended the kindness by remembering those who might be afraid or shy too much to share their story. I was the first one who hesitated to do so but seeing all these lovely soles here pouring their hearts out immediately impressed me and encouraged me to do the same. I salute you for showing a huge amount of empathy to each and every one of us. Thank you for being the way you are, the world needs people like you ❤️ Now I am even more proud to have you as a part of our team 🙏🏻

BQN537

Thank you 😊 @wafercookieflippers you are one in a million. I am very honored to know you dear friend 🥰🐨

Skye0Malley

I cried alone again today and I’m not sure why. Crying isn’t unusual for me these days. I see something that touches me or scares me and I’ll shed a tear. It’s become part of the “new normal” that people tell you about after a traumatic situation. But, today……I’m not sure why everything seems to be causing me anxiety and such sadness, so yes I cried a little every time I hoped no one was watching. I didn't need to be comforted or told everything will be ok... That I should be Happy, grateful and BLESSED!!! I need just the simple loving act of someone letting me “be” without expecting me to put on a happy face or not feel anger or fear or anything, good or bad. I have a great husband who tries his absolute best to understand all that I’m going through, but how can he understand everything that I don’t even understand myself? How can I put into words how absolutely crazy I feel for having panic attacks from just leaving the house?, but I do. Every. Single. Time. How do you even start to explain that to someone? That the very thought makes me want to crawl back into bed and hide. Yet I go, because I’m a survivor. I don’t want to be a survivor. Don’t get me wrong, I’m glad that I’m alive. But a survivor means you have been through something bad. Cancer is really life changingly horrible. It’s the kind of terrifying that never leaves you even when it’s gone kind of bad. It’s mark is forever left on you; on your body, your soul, your emotions, your finances every single part of you is never without the mark of cancer, you are never the same after cancer. Never! I’m a survivor and that sucks. All I wanted to be was a regular person, going through her regular life without the marks that cancer has left. So, maybe that’s why I cried alone again today.

Beth_Mc_Hugh

@Skye0Malley you are a warrior. Regular is bland and boring. Regular people don't struggle, cry or allow themselves to be vulnerable. Don't settle for regular, shine bright, be proud, share yourself and your fight. You have many, not regular, people in your corner.

Skye0Malley

@Beth_Mc_Hugh thank you for your kind words 💋 John Lennon once said, "it's weird not to be weird". I always found that comforting somehow. 😆 I'm so very happy I've found a place I feel safe to share with no judgement. For this I am tremendously grateful for you all.

Nat09

@Skye0Malley, I know you heard all those words of encouragement before, it’s going to get better, you are going to get through this, etc... It’s all well intended, I’ve heard it all before, now let me get real with you my friend. Maybe you feel like I do, my road to healing and accepting the new me was/is a hard one. I DON’T WANT TO LIVE LIKE THIS, I CAN’T DO ANYTHING I LOVE TO DO, WHO WANTS TO LIVE THIS WAY, THIS IS NOT ME, I FEEL USELESS, I WANT TO LIVE NOT JUST EXIST. I still cry some nights too, I still pray for mercy for one day this pain will be over. My husband is a wonderful man( married 20 years) it’s also very hard for him to see the woman he loves so much in pain and he can’t do anything to make it go away ( I’m sure your husband feels the same way), I don’t have cancer but I suffer an illness that changed my life for the worse, I didn’t ask for this, nor do I want it, can it please go away. Unfortunately it won’t my friend, but I can tell you, you need time to mourn for the person you used to be and accept ( try as best you can) the person you’ve become. It took me at least a year ( everyone is different)of depression and mourning my old self, then I told myself “ I don’t know how much time I have left on this earth, I can’t spend all my time crying or the days will feel endless. I got help, started meditating, watching anything on tv that would make me laugh and I feel better, I live the best life I can. Joining this community has changed my life, it makes me feel useful to help in the community, it’s something my illness DIDN’T take away from me and CAN’T take away. Don’t give up, don’t ever give up, one day at a time, one hour at a time, we are here for you 🥰🦓

firebombmarkus

@Skye0Malley You really are a warrior! You are not alone! You are loved and your heart is safe with us ❤️

Nat09

@Skye0Malley, I reread my post and I hope you, or anyone reading my previous post don’t take it as judging or trying to tell you what to do, I would never want to make you feel this way. I just wanted to explain how difficult my journey was to get to this point. It’s ok to have those feelings as well and to anyone who is going through this: you’re not alone feeling this way, but you will find your new normal. The support I get here from all my friends means the world to me, I am blessed to have you guys in my life.🥰🦓

Skye0Malley

@Nat09 I totally understood and loved what you wrote. Thank you for it❤❤❤

I'm going to therapy once a week and working out daily, eating better so far 62 pounds down. But sometimes I NEED to cry and not be frowned upon. Not have someone say "really tears? Be grateful it could have been worse". I feel sometimes I need to lay it all down. Let the tears wash away the B.S of it all, til I'm bare enough to build back up again.

😆 or long to short; a girl (48) just needs to have a good pity party so she can have a better day tomorrow🙏❤💋💋

@Nat09 you are awesome thank you for all you do xoxo

@frenioz00 I'm so grateful you found me and held out a hand xoxo

Everyone here you all ROCK XOXO