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.
@sunnyflower
I don’t remember exactly what meals I had but I stopped all soft drinks ice cream. Haven't had donuts in 3 years. No frozen meals or any packaged foods & no fast foods and only went to restaurant on my birthday except when my friend brought me something which wasn't often. Very few canned foods, beans for salad, tomato sauce (when the girl cooks for me she uses fresh tomatoes) garbanzo's can't think of what else. Had fresh whole foods that had to be cooked. Had beans & lentils (because of iron content) & salads. Lots of veggies. Of course I didn't give up any of the 5 most important food groups, Candies cookies cakes pies and pastry but did cut back on sweets, that was the hardest part. I try to get plenty of iron since I donate blood products 2 and sometimes 3 times a month. But I decided to eat right except for candy and not to gain weight again. My doctor said I had to go to the gym and her office called every week To make sure I had been there every day. I was also ordered to see a nutritionist. She wanted me to have 1 strand of spaghetti and call it a meal. Looks like I'm getting a roommate, a guy who loves to cook. He must be as crazy as Florida Mary's (@imallears) son.
congratulations on your weight loss that’s quite an accomplishment. 90 pounds is the most I’ve ever lost at one time, one long drawn out time that is. 2 years I think it took.
Take care,
Jake
The only way anyone possibly can. One day, one minute at a time with the strength and power of the Lord and the courage of the man I married 32 years ago this July. 🙂
Psychiatrist. I should’ve known. They should not be playing with meds like that without a course in “Leaving My Pharmacy Stupidity at Home,” and an advance course in “The Drugs that Nobody But Neurologists Should Prescribe for Life and Death Reasons.”
Sorry I’ve had to correct more dosages and regimens from psychiatrists than any other doctors who prescribe including nurse practitioners and dentists.
Asian, Native American, African American, and one other??
@bustrbrwn22
Okay, now here’s something that I almost didn’t believe when I first saw it…
Different foods have what’s called an ORAC score that measures antioxidant activity.
The higher the score, the better that food fights free radicals in your body.
Now get this…
Broccoli has an ORAC score of 890…
Kale has an ORAC score of 1,770…
But raw cacao powder has an ORAC antioxidant score of 95,500.
That’s nearly 107X MORE free-radical fighting-power than broccoli!
Don't feel guilty about eating chocolate.
Jake
@faithwalker007
Be careful getting prescriptions from nurse practitioners. After I demanded she check with the doctor she came back and reluctantly admitted I was right. You should tell doctors you may have had Stephen Johnson Syndrome. I believe antibiotics cause the most most SJS cases.
Take care,
Jake
@faithwalker007
Deleted
@bustrbrwn22
DON'T EVER THINK LIKE THAT and that's an order!!!
IF it was Steven Johnson it could have been fatal.
it’s important to try to control the anxiety/depression. it increases seizures in some people.
Your not weak or whiney. I'd be changing doctors if I were you.
Take care,
Jake
You are never weak or complaining for voicing a question, a concern, or fear to your medical provider about your health. If ANY medical provider makes you feel that way about YOU or your CARE, @bustrbrwn22 report them immediately to your state medical board, and find another provider as soon as possible.
Your very life may depend on it... not only mental health, but physical health.
I’ve had family members nearly killed from this neglect and blatant dismissive type of care— a brother who ended up at the Mayo with over 200 ulcers throughout his digestive tract and a mother who almost died from error upon error of Prescription orders in the cardiac unit because the doctor was too lazy to study her chart.
I ended up SLEEPING next to her bed and double checking every single medication order prior to being given by the nurse after her double stent placement just so I knew she would get to go home. I ended up stopping a glyburide order (she’s not diabetic), a tamoxifen order (still pissed about that one), and fixing her thyroid dosage that they calculated wrong when switching to their available brand.
YOU are the quarterback of your body. You are the one who determines if the person treating it actually respects it or not. Respecting you is one thing, make sure that the person has taken the time to get to know your case and your complaint enough that they respect THAT MORE.
If you don’t know why they are giving you a medication, ask them! Then follow with that information with a blind question to your pharmacist. That means ask your pharmacist something like: Can you tell me what this medication is for? I was really too nervous today at the doctor’s office to remember anything If the information doesn’t match up, ask the pharmacist and then the doctor. Find out what you are taking and why, the side effects and precautions to watch for.
DO YOUR RESEARCH. Nothing you take for a disease is natural for your body even if it’s “natural.” It’s a foreign body and your body MAY NOT LIKE IT AND REJECT IT in ways you won’t like.
When YOU ARE SATISFIED, THEN take your medicine. The times of the blind leading the blind are over. Patients are active participants in their care now.
I’ve told you this before, @bustrbrwn22 you are the one who matters. It’s YOUR body. You are not an experiment.