Brenda's Brainstorm & Trevor, a T Man Production 2009 - 2022

RA Blog Week; Day #5: WILDCARD  #1- Advice column -What is the best advice you’ve ever gotten, or advice you can give about how to live well with chronic disease and pain. Today, I am going to share some of the advice that I have received. I have lived with RA for over twenty-five years, so I pretty much have heard it all. I am however, going to concentrate and share with you, something practical. I have always believed, that experience is our best teacher, as well as watching those who live by example. My late mother was a great one, in that regard. I had the wonderful pleasure of meeting and working with one of the best patient advocates, who happens to also be my friend, Seth Ginsberg, who is the Co-founder and President of CreakyJoints. It was in April of 2012, when Seth came to North Dakota, and helped me, with my work advocacy day. We had a chance to spend some great quality time together. We talked about how it felt good to help others. I have since used his

RA Blog Week: Day #4 Today's writing prompt is; The pain of pain meds - Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members?   I actually touched on this very subject with a blog post in April of 2014. My storyteller, Trevor had this to share. I will post the highlights from that blog. It was titled: A Tale of Tragedy... There has been much discussion on social media about the use of marijuana for medicinal purposes. There has also been some heavy discussion on the use of narcotics. Here is the thing folks, if you live with chronic pain, Brenda believes in the right and passage, to be using these mediums. She would like to see legalization of marijuana in her state. Some of you are gasping I am sure. She doesn't want it to get high, so don't be so quick to judge, if you have not lived with chronic pain. She knows people wh

RA Blog Week: Day #3 Today's writing prompt is; Biologics can be scary - What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications? I had to find a new PCP, as my previous one had passed away. I had this physician while in the early stages of my living with RA. I stopped going to my rheumatologist after he told me, that I was going to get worse and that I should consider going on disability. He never had good news for me and I figured my PCP at the time could manage my care, just as well. Turned out that he could and did. My very first visit with this new PCP the question was posed; "Have you ever considered taking Enbrel?"   I knew at the time that was impossible to even consider, because of the cost and would my current insurance even consider it? This physician had much more knowledge about the current treatments. We decided that using Gold would be the very last

RA Blog Week - Day #2 Today's writing prompt is; Active versus reactive patients - We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet. As I shared yesterday, in the beginning of my RA journey, I was just trying to come to grips, with how I would continue to live with this devastating inflammatory disease. I did start researching. You have to realize in 1991, I had no home computer, so my only resource was basically the public library. I would pick up free copies of the magazine, "Arthritis Today" at the clinic where I was employed. The next year I did subscribe, after attending an all day seminar about arthritis. It was informative, but I looked around at the people sitting at the various tables and saw all the damage that this disease had done to them. I decided that from that moment on, I was going t

I remember that day, as if it were yesterday. Walking out of my rheumatologist's office, with the news, that I would have to live with the rest of my life. It was on a Wednesday morning and I was still in shock by having that reality, sink into my brain. You see, I was not actually told the words, "You have rheumatoid arthritis." I was told something more like, "This is going to take longer, than we thought." His nurse proceeded to hand me a bunch of pamphlets, with how I was supposed to live with this for the rest of my life. I had my answer right there. I had rheumatoid arthritis. I was thirty one years old at the time and thought my life was OVER. I was sole breadwinner, so how was I supposed to live and continue a full-time job? At this point, my RA was progressing quite rapidly. I need to back up here, approximately three years prior. I had been diagnosed with costochondritis, which is a painful condition involving the chest wall. I had been to numerous

Trevor here with some exciting news. My paws are all over the keyboard, as I am so happy, to share this with you. BOL On Thursday, September 8, 2016, the anniversary of Brenda's craniotomy or the day she celebrates as her *Craniversary* she became... wait for it!  Co-author of a book. She had known about the release date for about a month, so she had to keep it under her hat. What does that mean exactly? I'm a dog, so I bury bones. BOL Good old Trevor, being silly here. The book is titled; Grief Diaries: Living with a Brain Injury. It is #16 in the Grief Diaries Anthology Series. Brenda loves her play on words, so this is so sweet. Her promoting the book is going to be centered around the date it was released. It was also eight years ago on that same date, that she became a brain tumor survivor. I am so doggone proud of all of her accomplishments. I am sure her mother is looking down from Heaven, with pride. Brenda was pretty emotional that day. She does live with front