Sunday, February 26, 2017

A Tale of ND Cancer Lobby Day at the State Capitol...

Hello, my fellow readers. It's Trevor here, sharing another tale of Brenda's life. This time is going to be about her recent experience at the North Dakota State Capitol. She was invited to participate as an advocate, from the American Cancer Society Cancer Action Network, for the State of North Dakota.


How can you refuse, when you have something like this in your own backyard? Brenda was very excited to become a part of this. She has advocated many times, so this was nothing really new.


It was on February 22nd, this past Wednesday and it was a full day. It started with a hearing on a study on palliative care, which is different from hospice. That was something that Brenda was not that familiar with and was eager to learn more about it. Palliative care is implemented, when someone is diagnosed with a serious illness, at the beginning of their journey. It doesn't just have to be cancer. It brings in the whole team of support, not only for the patient, but for the family members as well. It is really a way of helping the patient to extend their life. Hospice is usually used at the end of life and also provide support for the family.


Brenda found the testimonies and discussion very interesting. More will have to be discussed before a final decision can be voted upon.


Next was getting together with the other advocates for a training session and pictures. They were taught how to approach their local representative, when bringing a bill to their attention. They were to have these meetings during their lunch period.


Brenda also heard a very inspiring story from a survivor and how she felt that palliative care was a big part of her recovery process.


Also during the lunch period she had a chance to sit down with a local house representative, that she had met, when CreakyJoints came to work here, almost 5 years ago. I cannot believe it has been that long. I was part of that day also. BOL


Brenda finally met her local senate representative, who she had emailed back and forth on another issue, several years ago and that was the oral chemo bill, which ended up passing. This is how Brenda got connected with the Grassroots Manager of the American Cancer Society Cancer Action Network for the state of North Dakota.


That afternoon Brenda has a chance to sit in on the House Session. She was seated with her local house representative, who she had lunch with. She was great with explaining the whole process and Brenda enjoyed it so much.


What you don't know is that Brenda had been battling a very bad cough that day. She was doing pretty well, until almost at the end, where she got a horrible coughing spell. She tried so hard. She was handed a cough drop, Kleenex and offered water. You could say that she disrupted the House Session. BOL She felt really bad about the whole experience, but what can you do? If I have to bark I bark, so coughing is probably the same thing right? I'm only a dog, so what would I know. BOL


She didn't get kicked out, but she was so happy when a recess was called. She had been there for almost 2 hours, so it was time to get things wrapped up for the day. She thanked her representative, for allowing her to sit in on this House Session.


Next Brenda went back and filled out some papers, from her experience that day. It was a that time, that she got her picture taken with her local state senator. What an honor!


Brenda enjoyed the whole day and learned a lot. Brenda wanted to do this whole day, in honor of her sister, who passed away from colon cancer. In a way, I think Bev would have been proud of her baby sister, for taking another step with advocacy.


Until next time, this is Trevor reminding you, that making a difference, can start in your own backyard.



Sunday, January 29, 2017

Tale of Snow...

Hi, it's Trevor here, with our first blog post of the year. It has been a January to remember. First, Brenda celebrated another birthday. She picked a cold month to be born. Then we have all of this white stuff to deal with.

Snow is something that I really haven't seen a lot of, until this year. It looks likes caves in areas, where Brenda walks. She has been using her ice treads almost every day to get to work. It is icy underneath the snow, that it helps her stay safe. For those of you who are not familiar with ice treads, they slip underneath your shoe. You pull them across the whole shoe and then there is a Velcro strip to securely pull on the side of the shoe. Brenda keeps these on her shoes all of the time, as her hands with rheumatoid arthritis (RA) can make it difficult to manage. She carries another pair of shoes in her bag to wear.

I have wanted to get out there and play in the snow, but Brenda says it's too dangerous and cold. She tells me, that she hasn't even seen much of her golden friend, because of it being so cold.

I hardly see that much of Brenda when she gets bundled up in the mornings. BOL She wears a coat, that is nice and warm in the inside. She has a cap with a golden retriever on it. Why am I not surprised? BOL She has a hood and a scarf, that her mother crocheted for her over forty years ago, that she puts over her face, to keep that nasty frost bite away. She also has nice warm gloves, to keep hands nice and warm.

In our state of North Dakota, you could end up getting frost bite within 30 minutes or even 10, if it were even colder. We've had wind chills of at least -55° at times. The wind makes it the most miserable for walking. It depends a lot on the direction the wind is coming from.

We've had quite the winter already, and it is only January. Many of you are concerned with Brenda walking out in these cold temperatures. She is smart and knows when it is not safe to walk. She has even been able to manage some rides home from work.

She walks as much as possible, because it helps her remain mobile with her joints. She has had several people stop and offer her rides. Some she has accepted, as they are people who live on her street.

The snow is pretty to look at on the trees. We have even had some days with sun dogs. That means that the temperature is definitely cold. I like the name though. BOL

I have fur, but Brenda says there are days, that it is not even safe for man or beast to be out there. I'm not sure what that means, but she has my best interest at heart. I believe she has a golden one too. BOL

We thought we leave you with a photo, so you could get an idea, what it has been like.

Until next time, this is Trevor wanting to play in the snow. BOL



Saturday, December 3, 2016

A Tale of Trevor; Six Golden Years...

Hi, it's Brenda, and I will be sharing this tale in my own words. Usually my storyteller, Trevor shares our tales, but I want to tell you the story behind Trevor.

Trevor came into my life on November 30, 2010. It had been a very difficult day, so to see such a beautiful sight, even though it was a plush dog, was a great comfort.

So a little background about how this all came about. I had decided that a golden retriever would be the choice for this plush dog. The next step was a name that would go with my current blog name; Brenda's Brainstorm, which was started in 2009.

I decided that this dog would be telling my tales, so it had to click. Our blog was changed to Brenda's Brainstorm & Featuring Trevor's Tales. TT for short as that was part of his first dog collar, that my late mother made for him. It also had a purple ribbon, as that is the awareness color for meningioma, the type of brain tumor that I had.

Since he was a storyteller with sharing tales, I again changed the blog name to; Brenda's Brainstorm & Featuring Trevor, The Tell Tale Dog. He still has his TT on his dog collar, so it worked.

We branched out with inspirational messages for quite sometime, first as daily and then going to weekly. I after all, was the one coming up with them and weekly worked out so much better. I was even sharing them on some of my friend's Facebook walls.

Next Trevor was featured in several Tumors Suck videos, sporting a T-Shirt and stickers. I will share some photos at the end of this post.

There were some of you that thought for sometime, that Trevor was real. That does not surprise me, because when my mother and I opened the box that he arrived in, we thought he looked real too.

The first couple of days when I would walk into the room and see him, it took a moment. His features looked so real to me. Even those who have seen him, will tell you the same.

Trevor has now been with me for six years. In that time, has worn many hats. What I mean by that is, not only is he my storyteller, but he helps me spread awareness and hope through photos.

Trevor also helped me with his "Barks of Gold" and also "Trevor's Golden Corner" while I served as editor of the CreakyJoints Poet's Corner (& Artists too) for three years.

Before that, he was asked to become mascot for Christine's Superhero Juvenile Arthritis Kids formally named; Christine's Kids. I even wrote a poem for that occasion.

Trevor has even been the topic of conversation when I was a guest on Brain Tumor Talk; Worldwide Radio Show, with our friend and host, Rick Franzo. I recently was on again for the second time, talking about our book, which I am co-author; Grief Diaries: Living with a Brain Injury. Trevor is also mentioned in the book and I shared that part with Rick and the listeners.

I decided to change our blog name yet again, as you all now know, who Trevor is to; Brenda's Brainstorm & Trevor. We are a team. A golden retriever and a brain tumor survivor, who lives with rheumatoid arthritis.

Trevor shared tales about my mother's journey from going into the hospital, the nursing home and ultimately her passing on May 31, 2011.

I know Trevor was meant to come into my life, at the time when he did. He didn't start telling his tales until February of 2011, but it was from that point on, that he was to be my helper and companion.

It has been six golden years. Bringing him to life has been one of my greatest joys with creativity.

I leave you with some of the highlights, during these past six golden years... ~Brenda~



 

Saturday, November 5, 2016

A Tale of Grief

Trevor here again, with our monthly post. This time is going to be about a subject, that not many people want to talk about and that is grief. Grief can occur in many forms. It doesn't have to be a loss of a loved one or friend. It can be saying goodbye to things that we love, because of our health. That was the case with Brenda.

We are however, going to share about some of the losses that Brenda has experienced in her own family.

She lost her beloved sister Bev, in 2003 to colon cancer. Bev was the core of Brenda's family, so that was a great loss. Brenda loved Bev very much, as she was always encouraging her to try new things. She would be so proud of Brenda now. I never met Bev, but from what I have heard, she was loved by so many.

Shortly after Bev's passing, Brenda's father was diagnosed with Alzheimer's disease. He took Bev's death really hard and Brenda thinks, that was his breaking point. It was a long four years, seeing him slip away gradually, as this truly is the "Long Goodbye." Brenda's mother was his primary caregiver and Brenda would come on most weekends, so that her mother could do something as simple as taking a shower, so they wouldn't have to worry about him taking off. It really took a toll on her as well. He lost his battle in 2007, almost a year before Brenda's brain tumor diagnosis.

It was after her father passed away that her mother asked Brenda to stay with her every weekend, as she did not want to be alone. She wanted to be able to do things of worth. I think that is what drives Brenda so hard, with her advocacy work.

As you know it was in 2011 that Brenda's mother became ill. As I shared before, taking care of Brenda's father, had taken its toll. She was losing weight, as stress was a big factor. There is more than meets the eye, when you are the sole caregiver of someone. She fought hard not to have to put Brenda's father in a nursing home, as she said it would be like divorcing him. She took her vows seriously and took excellent care of him. I never met him, but I did meet Brenda's mother and know, what great care she took of her, while she was recovering from her 2nd carpal tunnel surgery.

It was during this time that Brenda's mother got worse and had to be put in a nursing home. Brenda also experienced another death in her family, that being her brother-in-law, who took his life. We don't always understand these things. This was the month before Brenda's mother passed away. That was truly a sad year.

Then the next year another brother-in-law, suddenly passed away from an apparent heart attack. He had been helping Brenda out with some details after her mother's passing and even with her taxes. The last conversation that they had he said, "Say hello to Trevor." I met him briefly, but he sure seemed like a nice fella.

Since then there have been three more deaths, another brother-in-law. Sadly, we do not have the details of his passing, but Brenda has a great memory of their last meeting together. It ended in a hug.

The last two were a great nephew who was stillborn and a great niece, who fought hard, but sadly lost her battle at the age of two.

So Brenda knows grief, make no mistake about it. We thought it was time to bring some of this out, as we are hoping it may help some of our readers.

With Brenda joining the Grief Diaries Village last year, and being able to write about some of her feelings in regard to her mother's passing, has been a great comfort for her. She was a contributor to one of the books in the anthology series; Grief Diaries: How to Help the Newly Bereaved. It's a book for those who want to know, how to be a source of comfort, for those they come in contact with, who are newly bereaved. Brenda is also working on another book in the same anthology series, again with helping the newly bereaved.

Brenda has also experienced, several losses of friends, who could not accept her new normal. I will say if it bothers you, then you are the one with the problem, not Brenda. Brenda had a friend tell her that once, who was in a wheelchair. Her friend had accepted it, so why should it have bothered anyone else? That was a real eye opener for Brenda.

Brenda's health has caused a lot of changes for her. She cannot do everything that she used to be able to do. Her philosophy is, "Focus on what you can do; not what you can't."

Grief has no timetable. There are days when it comes in waves and Brenda weeps.

This is normal. You never get over it! You just continue to move forward, even if it is slow.

All that person wants or needs, is for YOU to be there, that's it! You don't have to say a word.

My golden heart aches for all of these losses, but I am there, when she needs me.

~Trevor~

Saturday, October 22, 2016

A Tale of Agony

Hello my fellow readers, it's Trevor sharing another tale. This week has not been an easy one for Brenda.

She experienced one of the worst attacks in her living with RA. As our readers know, Brenda has been living with rheumatoid arthritis (RA) for over twenty-five years. This disease is full of surprises and most of them are not pleasant, hence this tale.

Rheumatoid Arthritis is an autoimmune or inflammatory disease. Brenda has a form of both. Autoimmune, simply means that the body attacks itself and there is really nothing to fight back with. Brenda prefers to use the word attack over flare, as she is in a battle every day.

Brenda woke up Monday morning not feeling that great, as her left upper leg was starting to hurt. She figured by the time she walked to work, it would be much better. She climbs the stairs whenever she can, to keep those muscles lubricated. She finds that drinking lots of water helps with this as well. Her barometer head was terrible this week as well. I told you, this was not a good week for her.

Anyway on to our tale. The pain became more intense as the day went on and now her nausea was setting in. Every time she would get up from her chair or would go back to sitting down, was becoming pure agony.  By the end of the day, she told one of her coworkers that if she was not feeling better in the morning, she would not be coming in.

As the night went on, her pain intensified. She told me it was like a wishbone, where someone was trying to pull at her left leg. Now when I hear *Wishbone*... I think of that cute little dog that would travel to all those places, wearing all kinds of costumes. Obviously, this was not that kind. I love my dog shows. BOL

Her first PCP told her that she had the moving kind of RA. This is true, because at one time or another, it has attacked almost every part of her body. It usually only attacks one side at a time, which she was very grateful for, in this instance.

So the next morning she got up thinking it was a bit better, so she set her clothes out for work. She then tried to sit down and that is when it became so excruciating. There was no way she could even lift up her leg to get her slacks on. She was alone and decided that for her safety, she could not attempt trying to get dressed or even walking down the stairs at this point. She went back to bed and later called in to work, informing them that she would not be there.

Her nausea was definitely getting worse as the pain became even more intensified. I felt helpless, because there was nothing I could do to help Brenda feel better. I told her she could lean on my soft fur for comfort, but that would be a stretch for her to get to me. I am 3 feet high, but she still would need to bend to get to me. See why I felt so helpless?

She rested most of the day. What else could she do? Brenda's stomach does not tolerate pain medications, as she has pretty much tried them all. After all, she has lived with this disease for over twenty-five years, so you become somewhat of a veteran in this war. That is why Brenda uses the word attack over flare. It's a personal preference, as she does with nonmalignant over benign, in reference to what kind of brain tumor she had.

These things are personal to Brenda and we are trying to bring across the seriousness here, of what she goes through every day.

Later that morning, she attempted to walk down the flight of stairs to get her mail. Walking down was not so bad, it was going back up, where her left leg was pulled. It was only about 6 steps, but they are wide. Imagine having that pulling at your leg on each step, with that amount of pain?

She rested some more and later attempted doing slow range of motion exercises. She does these, twice a day and has throughout her years of living with RA. That is what saved her from having to go to OT or PT after her craniotomy. She couldn't lift that left leg up, without that excruciating pain and then of course the nausea starts to set in.

She tried to move around her apartment by walking slowly around, to keep some type of movement going. You see, lying in bed too long is not good for Brenda, as her back starts to tighten up and hurt. It's hard to explain this to those who do not go through this day after day. We know some of our readers gets this. We hope for those who try to understand, that this will somehow be a bit of a learning curve for you.

The next morning the pain was starting to ease a bit, but now she was still not feeling up to par, so she decided to stay home one more day. You have to be smart. After all, it is your own body you are dealing with here.

By the end of Wednesday evening, the pain was pretty well managed. That was all through getting rest and taking it easy. Brenda knows when she has these attacks, they will eventually leave. She always tells herself that, at the onset. There is an expression, that her mother always used. "This too, shall pass."

When you are in battle, you sometimes have to call in the troops for reinforcement or support. Brenda would like to thank all of those who were kind enough to post messages of support and for your prayers.

Brenda and I are a team. I am glad that my being with her this week, was a comfort. She shed many tears, as that is all you can do when you are faced with that amount of pain.

I want to leave you with our favorite photo. This is what makes us so great in spreading awareness and hope. There is always hope, folks.



                                                              ~Trevor & Brenda~

Saturday, October 8, 2016

Tale of a Talk Show...

Hi Trevor here again, sharing another exciting tale that happened recently. Brenda was a guest on Brain Tumor Talk: Worldwide Radio show, for the second time, on Friday, October 7th.

Rick Franzo who is the host and also a two time meningioma brain tumor survivor, asked her if she would like to be a guest and share about the book. A couple of weeks ago, the date was put in place, when she would be on.

This was a wonderful opportunity for Brenda and she enjoyed it immensely. Rick makes it so easy to engage in a conversation, although Brenda was doing most of the talking. BOL He even said at one point, that half of the hour was gone.

He even mentioned, good old Trevor here and that made my golden heart sing. BOL Rick and I were actually in the same video for Tumors Suck and that is how he and Brenda first got connected on social media.

There were a lot of great things brought out, during that hour, that seemed to fly by. Brenda had a chance to shout-out to several people, who have been an intricate part of her life on these two different journeys.

Brenda was so happy that he played an Elton John tune before, she was on the air. They were kidding her at work, if she could also pick out the songs. She told them, that he would probably be playing a song by Elton John, as he did before, when she was a guest last year.

This time was Philadelphia Freedom. The time before was Levon. 

Another surprise during her interview was that he mentioned that Brenda had a famous relative, who played for the NFL. I wonder who that could have been? It was of course, Jim Kleinsasser, who played for The Minnesota Vikings.

She had a chance to share a little of her background at the beginning. She had so much fun and couldn't believe that it went so fast.

Brenda spoke clearly and slowly, so that others could grasp what she was saying. She was cognizant, of that fact and I think she did a wonderful job.

She had a chance to get the word out, about several organizations; The National Brain Tumor Society and CreakyJoints, of which she is an advocate for both.

It was a wonderful experience and Brenda will certainly do it again, if asked, which she was before the show ended yesterday.

We want to thank Rick Franzo, for his kindness and I want to thank you, for having Brenda's back, during her interview. If she were to lose her train of thought, we knew he would jump right in.

This has been a joy to my paws, to be able to share this tale with you.

Wishing you all golden blessings!

~Trevor~

Saturday, October 1, 2016

A Tale of Happiness

RA Blog Week Day#6 WILDCARD #2 Coping with Depression - How do you manage the inevitable lows of having RA? Do you view RA as being forever or do you look forward to remission? What are the best ways to cope with the depression associated with RA?

Today I choose WILDCARD #2 on Coping with Depression. As I mentioned in my first blog post this week, in the beginning days of RA, I thought my life was over.

I had to find my smile again. That required reaching down deep and finding that inner child who loved to laugh at the simply pleasures of life.

As a child I used to love to watch "Our Gang or The Little Rascals"... I'll let you in on a little secret. I still do.

This is a time, when I can escape from all all the pain or worry, that living with RA brings. RA is a nasty disease, but I have learned to realize that after all of these years, it will never have me. I can go and be that kid again enjoying "The Little Rascals."

I also love to write and one of my greatest joys was becoming co-author of a book. Grief Diaries: Living with a Brain Injury. It was like my inner child coming back to life. It gave me excitement and purpose.

One of the things that becoming a brain tumor survivor did not do, was to take away my sense of humor. In fact, it may have become more dry. I'm good with that.

One thing that pretty much took care of itself and it still amazes me. My outlook on RA completely changed, after having my brain tumor removed. Things became so much more meaningful. Especially the little things. Seeing a child smile or giggle.

I found that inner child again. I could laugh and feel like anything was possible. I had real HOPE!

I'm not saying that there are not dark days. There sure have been and I am certain, that more days like that are ahead. The key I have found, is not to remain in the valley too long.

That is when I go back to the greatest joys of my childhood and put in a DVD of "The Little Rascals." It brings me back to a wonderful time and the laughter, washes all the sadness and pain away, if only... for a little while.

May my inner child, never grow up. There is a great quote by Voltaire, that I want to leave with you. " I have chosen to be happy, because it is good for my health." Laughter is truly the best medicine.
                                                              Blessings to all!
                                                               Brenda