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DiscussionPost-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: Sep 16, 2024 | Replies (609)Comment receiving replies
Replies to "I'm having a desperate time of it right now. Well, actually all the time, not just..."
@spottedcat83, I am so happy you found this space that you can meet others who share such similar stories and feelings. I think one of the biggest emotional reliefs that many people find in forums like face to face or online support groups is that they are not alone in what they are experiencing. And you certainly are not! However, this doesn't do anything really to help the very real barriers that you are experiencing with your attempts to access and obtain real care for the problems you are facing. I wonder, have you reached out to your primary care provider about these issues? You might find it helpful to visit the following websites to learn more about Post Intensive Care Syndrome, and then bring this new knowledge with you to an appointment:
https://connect.mayoclinic.org/page/pics/
http://www.myicucare.org/Thrive/Pages/default.aspx
I also want to let you know about a face to face support group that we offer here in Rochester MN if you are local. We meet the third Monday of every month. Our next meeting is tomorrow from 2-3pm! Here is a link to more information about this group:
https://connect.mayoclinic.org/page/pics/tab/resource-81/
Thank you! I live in the Seattle area, so I can't make it to your group, but maybe I can find something closer to home.
🙂
Yes! There is a group from Harborview hospital who are members of our THRIVE collaborative through the Society of Critical Care Medicine. Here is the website for THRIVE for more information (and other resources as well!): http://www.myicucare.org/Thrive/Pages/Find-In-Person-Support-Groups.aspx
Let me know if you want more info!
You are not alone. There are specialists who are part of a post icu and recovery clinics across the country who may be able to help.
You are correct you have experienced a trauma and you are both trying to process that experience, heal your self and recover your cognitive brain function. But the medical insurance system is not good at checking underneath the hood of a seemingly normal and healed body. Check out the thrive website and learn more.
By posting and sharing your story and asking for help you are doing the important work
Keep it up