Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
Interested in more discussions like this? Go to the Neuropathy Support Group.
@bustrbrwn22
Nope, not personal at all.
As often as I fall and hit my head I'm surprised I haven't bled out by now. My house looks like a slaughterhouse half the time. If I ever have Status seizures again I’m finished for sure if I'm alone. I may have a roommate from New Jersey shortly (I hope). The nut loves to cook, imagine that.
@jakedduck1. I am glad you are going to have a roommate. I live alone too and I always wonder what would happen if something happens to me. I hope you don't fall again. You have such a positive attitude albeit the issues you have. Two thumbs up to you. The thought of roommate did come across my mind... for a few seconds. Well, you take care now, I'm sure many of us here in connect enjoy your posts. Keep them coming!!
Hi Toni. Thankyou for everything. I sure know about having to cover your bad eye. When I developed this awful Giant Cell Arteritis, the first symptom to alert the doctors was that I suddenly went blind in my right eye...just what is so dangerous about that disease. Actually, I had attended our E.R. FIVE different weeks because I was feeling so unwell and experiencing temporal pain. Long story short, I have about 1/6th sight in that eye, which confuses my brain and causes an awful mess of my head. I often cover that eye, just for a break - just like you! Hugs, Laurie
@jakedduck1
Hi Leonard, you wouldn't like carob. If I remember right it's not as sweet as dark chocolate and maybe kind of nutty tasting. I don't use it. I think they have carob chips for making cookies.
As for the dark chocolate and coffee comments, I am laughing my heart healthy self off. You are a hoot.
FL Mary
When I was in end stage liver disease, living alone, and regularly in need of emergency care, my friends chipped in and got me a mobile monitor for times when my support person could not be there. It was a blessing. If you fall they call immediately and if you don’t answer, an emergency vehicle is sent. It’s not too expensive and it was definitely comforting. There are several out there. The one I had was called MobileHelp. I too hope you get your roommate, but just in case...
Useful information for newcomers to the Neuropathy group: https://www.health.harvard.edu/diseases-and-conditions/new-thinking-on-peripheral-neuropathy
Hello. These are good truths here. Bravo for you looking out for your mother and all who have needed that. Most people are so intimidated by our healthcare providers because in a very real sense, they hold the quality of our lives in their hands.
It is extremely difficult for the lay person to advocate for themselves and to equip themselves with the knowledge they need to do so. Having worked with over 80 providers in my 20+ years in patient care, I really got a good sense that they are just like us in many ways. Yet, I can still be intimated easily.
Patients have rights and Kaiser Permanente encourages them to become familiar with what they are with handouts, mailings and brochures on the wall. I love that. Their customer service will encourage patients to make a complaint when they call with a problem!
I care very deeply about each one of you and wish for you the very best everything.
Many blessings, Sunnyflower
I know! It's hard to be so close to 70!! Where did the time go? #$?! :%_$&?? ⌚🤔🥴🥺😲
Jake, I 'm wondering if your nurse practioner was a little put off when you asked her to check with the doctor bc she/he practices under their own license unlike physician assistants who practice under a doctor's license? I am out of order on these messages so please forgive me if I am off here. Good for you to ask anyway! Sunnyflower
Thx for the chuckle Jake! And good for you to be eating so fit! What candy??? 😉