Lynjbennett65's Status Updates

, beautifully aid <3 I am guilty of seeking validation outside myself as well. That is hard to overcome, but it can be done. It must be maintained. And yes, the ball is in their court - acceptance, kindnes and grace are essential to establishing and maintaining relationships. You deserve that. Never let them convince you it's asking too much. - Warmly, Donna (Team Member)

Right after I posted my reply to you I read this quote. "Refuse to chase peace where it can't be found." WHAT? Is that a thing I do? YEP that's a thing I do! WOW. When did that happen? I think I've always try to be independent but when the POTs syndrome hit, slowly I began to turn to others to tell me that everything was going to be okay. Of course it is, mostly ok now. However, I still seek peace through validation from my family. That's not really helpful at present. My sisters just haven't accepted that a handful of chia seeds are capable of healing me. I've been past the hope that anything I put in me will heal me... the only healing I will get comes from inside me. Rethinking what success looks like for the average chronically ill person is part of the gig. If they truly want to help they'll have to accept that the best thing they can do is help to strengthen my resolve to be brave and to take care of myself. Kindness, grace and loyal friendship are powerful healing tools. (that's science) It doesn't have to be family who form that bridge between where you are now and where you want to be. Ultimately it is our choices that gets us from point A. to point B.

, (((hugs))). Birth families can be exhausting, and you don't have to let them put you in the place you found yourself when they left. You have the right to peace. You can tell them that you are done judging yourself, and that you are done being judged for things beyond your control. It's completely okay to set boundaries, especially if your mom as the mediator, and that energy is missing. I hope today is a better day. - Warmly, Donna (Team Member)

Bad day yesterday. My sisters were all over me about my syndromes. I was exhausted by the time I went to bed. My poor dad. He sees his daughters fracturing in the face of the death of my mom and he doesn't know what to do. I don't know what to tell him. Was mom the glue that held us together or was our fear of the inevitable lecture from mom enough to keep us in line? I will never know. I loved my mom she'd be devastated if she knew how things have turned out over the last year.

, oh goodness, I hope you do - and I'll be here anytime you need a boost of resolve! All you "need" is the grace to be - who you are, how you are as you are, how you feel in any specific moment. - Warmly, Denna (Team Member)

Oh! That's so great to read. Thank you for telling me! Did you read 's article about advocating for yourself? Such a brilliant article. I printed it out! I've got to be more assertive I think. Just because I don't want anyone to be upset with me I become the shrinking violet. (Which is REALLY not me) I mean many times people are already uncomfortable or upset by my presence. I've got to have a special diet, a place to be able to sit down (in case I faint) I wear compression clothes and the list goes on. There's no point in trying to become invisible. I need to be upfront with people. Actively listen to their point of view but then set my boundaries... say what I need with minimal explanation and no apologies. My sister literally wrote to me in a text "You need to change doctors, you need to get better, what you have isn't terminal. You should be getting better and have a better quality of life". Really? Have you met me? This is why I am resolved to stop apologizing.

, I agree, a very good place - and I have adopted your commitment to myself in my quest for peace. The world is not built to provide that for us when we stumble, so we do need places like this. Thank you for the inspiration (((Hugs))) - Warmly, Donna (Team Member)

Thank you Donna. I've also decided not to judge my memories but to let them pass without comment. Memories aren't always accurate and I can't change what happened (at age 60 why would I?) I'm telling my friends here at rare disease about these revelations because I want to be sure I don't slip back into the old, and frankly easier, pattern of feeling guilty. We cheer each other on here. This is a good place 😀.

, that is monumental! I'm glad that you have gotten to the place where you can stop blaming yourself (and not accept being blamed)for being sick. = Warmly, Donna (Team Member)