A Word From Seenie

We know. Right now, it just seems like bad news and more bad news, doesn’t it? And yet in some ways, we are fortunate to be rare disease patients. One of those ways is that we are part of a global Ben’s Friends community where we can go for understanding and empathy. Within this community, we talk openly about things that really matter to us and to our families. No annoying religious or political arguments, silly memes or lame jokes. And no judgment. We share, we compare, and we support each other, even though most of our community friends are known to us by screen name only.

Membership in the rare disease “club” does have a few benefits, and our membership in this community is one of them. Log in, drop by or stay awhile. Offer a kind word. Support someone who is struggling. Reach out for a pick-me-up yourself. The special bond of friendship is here, and this thread is open for your comments.

Stay safe and keep well

Seenie from Admin

PS wash your hands! https://youtu.be/-LKVUarhtvE

If login isn’t working for you, getting back into the community is easy:

Your “User Name” is your email address.

Then say you’ve forgotten your password (even if you remember it).

Follow the instructions. And there you go.

Welcome back!

Hi Seenie, I live in a state where we are to stay at home. For 17 days, but I personally think it will be more, I will be experiencing a new, unexpected and very strange way of living my life. At 5pm, the stay at home, policy went into effect today. I know logically that this is the only way to get rid of this horrible virus. I hope other states follow these guidelines and soon. We all have to do this to stop people of all ages from getting sick or even dying. Never in my life did I see this coming. I haven’t worked in two years but before that, I worked as a nurse in several hospitals for 22 years. I have a lot of medical experience and worked on many different types of floors. I feel so helpless and guilty. My fellow coworkers and physicians and all the wonderful and often times unnoticed people are on the front lines helping people to survive and at the same time, risking their own lives. I also feel guilty. This is the one and only time I actually am glad I am unable to work due to fibromyalgia. I am being so selfish. I don’t want to be out there right now. It’s chaotic, overwhelming and unsafe for these healthcare hero’s. I do not want to leave out all the incredible and hardworking people delivering take out to people or the people who work at grocery stores or gas stations. And I want to send out a huge thank you to those people I didn’t include but are oh so very important during this critical time in our lives. As for the very selfish part of me, I’m sad. I feel trapped and scared. I feel depressed and helpless. I do have a lot to be thankful for, but… I still feel really sad. My lifelines have been cut and I feel alone, although I’m not alone at all. We do have each other. I wish I could be with you in person. My thoughts and prayers go out to this community of warriors. Big hugs to everyone. :hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs: