A Tale of the Blues...
Trevor here, with our final blog post of 2019. What a year this has been for Brenda. She started her 32nd year with the clinic, where she is employed.
Brenda recently had her #1,100 injection of the biologic she has been taking for 18 years. She says being able to take this for so long, has allowed her to remain employed full-time and continue to live as normal a life as possible.
I suppose you're wondering what we meant by our title. Blue is actually the awareness color for arthritis. As you know by now, if you've been reading this blog for the past 10 years, that Brenda has lived with rheumatoid arthritis (RA) for 28 years. You probably all thought it was going to be about the holidays and how they can be hard for some. It's true, they are not an easy time for Brenda, as she does not have family near and will likely be alone. We did not want to dwell on that, rather to show that there is HOPE, even while dealing with the challenges in life.
As you know, Brenda is a great lover of music. She got to attend a rock concert last Saturday evening with a long time friend. They had a blast. When you get to sing along with songs by Twisted Sister and Queen, it really doesn't get any better. Not only was it a chance for Brenda to let off some steam, but to do something that she really enjoys. It was over 3 hours, so it was a full evening, That can sometimes be taxing for Brenda, as energy is not something that she has a great supply of. We wanted to bring out that planning such an event, has to be done with some strategy.
Brenda had an earlier lunch date with her GF and some shopping after, so they scheduled it earlier in the day, so she would have a chance to rest a bit before going to the concert. It gave her a chance to enjoy a nice lunch, get some errands done and even enjoy a hot treat after. Brenda has cut down on her caffeine considerably in the almost past 2 years, but she has managed to find some great alternatives with decaf as a substitute. We realize that she is still getting a little caffeine, but it is considerably less and that was her goal. It was mainly to help with her high BP and hopefully keep the bad headaches away. The BP is still a challenge, but her PCP and her are working together, to try and get the best one to help regulate it. Her visit the other day with the rheumy proved, that might finally be the case, as she said it was good.
Living with the Blues when it comes to arthritis, involves so much. Brenda is a great proponent, when it comes to spreading awareness and of course, she has me to help in that regard. BOL
Having lived with RA for 28 years, gives you a type of education, that only few could understand. Her medical team continually praises Brenda for her knowledge. Her new rheumy the other day, was no exception. She told Brenda that for having lived with this disease for 28 years, that she is really doing well. That is all in part, because she is able to continue taking a biologic. It does not come without a cost.
Every year it has to go through prior authorization, or permission from the pharmacy benefit manager, who basically call all of the shots, or to paraphrase Brenda, "Play God with our lives." Those are strong words, but they are frightfully true. You basically have no control. You have to get your medications dispensed, where they tell you. Convenience is of no concern to them. It all boils down to money.
Speaking of money, Brenda has to shell out her entire deductible, so she can take home her 1st box of her biologic for the year. She continues to save all year long, so that means that some fun activities have to be planned out carefully, according to budget.
You give up a lot, when you live with a chronic illness. It can be draining on your finances, so when she tells you she cannot donate to this or that, don't get upset. How would you like to have to give a 4th of your entire income at the beginning of the year? This has to be changed, and that is why Brenda is one of the members of the Global Healthy Living Foundations's 50 State Network. Brenda represents her state of ND and has even testified to that end.
Brenda is also a member of the patient council, participating with others around the country, in teleconference calls and helping with solutions for those living with their Blues. There are over a 100 different types of arthritis, so that is a lot of Blues to deal with.
Brenda does not wish to stew about all of this, but to take action. That is why she became an advocate. She is not alone facing her Blues on a daily basis. It's more than aches and pains and it's not just an old person's disease. 300,000 kids also face their Blues. She knows of some pretty courageous young people, as she follows their stories on social media. That encourages Brenda, more than you know.
Facing the Blues does not have to be daunting. Remember, you're more than your disease and even stronger. That is similar, to what Brenda was told by one of her coworkers in the beginning of her RA journey. When she was diagnosed with her Blues, she thought her life was over. She was 31 years old at the time, had a full-time job and was hardly able to walk. Her fingers, wrists, and ankles were the joints that got attacked first.
The next time you face your Blues and your day is bad, we HOPE that you remember that Brenda keeps fighting every day and you can too!
We are going to leave you with something that Brenda shared with her coworkers last year, during World Arthritis Day, which is always commemorated on October 12th of each year.
Merry Christmas and Happy New Year to our readers.
~T Man barking off for 2019 ~
Brenda recently had her #1,100 injection of the biologic she has been taking for 18 years. She says being able to take this for so long, has allowed her to remain employed full-time and continue to live as normal a life as possible.
I suppose you're wondering what we meant by our title. Blue is actually the awareness color for arthritis. As you know by now, if you've been reading this blog for the past 10 years, that Brenda has lived with rheumatoid arthritis (RA) for 28 years. You probably all thought it was going to be about the holidays and how they can be hard for some. It's true, they are not an easy time for Brenda, as she does not have family near and will likely be alone. We did not want to dwell on that, rather to show that there is HOPE, even while dealing with the challenges in life.
As you know, Brenda is a great lover of music. She got to attend a rock concert last Saturday evening with a long time friend. They had a blast. When you get to sing along with songs by Twisted Sister and Queen, it really doesn't get any better. Not only was it a chance for Brenda to let off some steam, but to do something that she really enjoys. It was over 3 hours, so it was a full evening, That can sometimes be taxing for Brenda, as energy is not something that she has a great supply of. We wanted to bring out that planning such an event, has to be done with some strategy.
Brenda had an earlier lunch date with her GF and some shopping after, so they scheduled it earlier in the day, so she would have a chance to rest a bit before going to the concert. It gave her a chance to enjoy a nice lunch, get some errands done and even enjoy a hot treat after. Brenda has cut down on her caffeine considerably in the almost past 2 years, but she has managed to find some great alternatives with decaf as a substitute. We realize that she is still getting a little caffeine, but it is considerably less and that was her goal. It was mainly to help with her high BP and hopefully keep the bad headaches away. The BP is still a challenge, but her PCP and her are working together, to try and get the best one to help regulate it. Her visit the other day with the rheumy proved, that might finally be the case, as she said it was good.
Living with the Blues when it comes to arthritis, involves so much. Brenda is a great proponent, when it comes to spreading awareness and of course, she has me to help in that regard. BOL
Having lived with RA for 28 years, gives you a type of education, that only few could understand. Her medical team continually praises Brenda for her knowledge. Her new rheumy the other day, was no exception. She told Brenda that for having lived with this disease for 28 years, that she is really doing well. That is all in part, because she is able to continue taking a biologic. It does not come without a cost.
Every year it has to go through prior authorization, or permission from the pharmacy benefit manager, who basically call all of the shots, or to paraphrase Brenda, "Play God with our lives." Those are strong words, but they are frightfully true. You basically have no control. You have to get your medications dispensed, where they tell you. Convenience is of no concern to them. It all boils down to money.
Speaking of money, Brenda has to shell out her entire deductible, so she can take home her 1st box of her biologic for the year. She continues to save all year long, so that means that some fun activities have to be planned out carefully, according to budget.
You give up a lot, when you live with a chronic illness. It can be draining on your finances, so when she tells you she cannot donate to this or that, don't get upset. How would you like to have to give a 4th of your entire income at the beginning of the year? This has to be changed, and that is why Brenda is one of the members of the Global Healthy Living Foundations's 50 State Network. Brenda represents her state of ND and has even testified to that end.
Brenda is also a member of the patient council, participating with others around the country, in teleconference calls and helping with solutions for those living with their Blues. There are over a 100 different types of arthritis, so that is a lot of Blues to deal with.
Brenda does not wish to stew about all of this, but to take action. That is why she became an advocate. She is not alone facing her Blues on a daily basis. It's more than aches and pains and it's not just an old person's disease. 300,000 kids also face their Blues. She knows of some pretty courageous young people, as she follows their stories on social media. That encourages Brenda, more than you know.
Facing the Blues does not have to be daunting. Remember, you're more than your disease and even stronger. That is similar, to what Brenda was told by one of her coworkers in the beginning of her RA journey. When she was diagnosed with her Blues, she thought her life was over. She was 31 years old at the time, had a full-time job and was hardly able to walk. Her fingers, wrists, and ankles were the joints that got attacked first.
The next time you face your Blues and your day is bad, we HOPE that you remember that Brenda keeps fighting every day and you can too!
We are going to leave you with something that Brenda shared with her coworkers last year, during World Arthritis Day, which is always commemorated on October 12th of each year.
Merry Christmas and Happy New Year to our readers.
~T Man barking off for 2019 ~
All the best to you and T-Man through the holidays and into 2020!
ReplyDeleteThanks Renee! To you also!
DeleteHey have you thought of going on jimmy Fallon? I would watch you on TV since you are such an amazing writer.
ReplyDeleteHaha! I've never thought of that. Trevor would have to be the star of the show. BOL
Delete