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.


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!


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!

Friday, September 30, 2016

A Tale of Advice...

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 quote many times. "Helping others, really does help us feel better."
I don't know if you have ever had the pleasure of working with Seth, but he is one energized person, and you cannot help, but let that kind of energy flow to you. I even told him, that I felt so much different that day, as we had a lot to accomplish. It turned out to be a great day.
It was to commemorate my taking a biologic, my 11th Anniversary of taking Enbrel. I even got to pick the date, when he would come and work with me. Of course, it was April 20th, because that was also the same date, that I had my first injection of Enbrel in 2001.
It was a day filled with meetings, a local TV interview with NBC North Dakota News, and also a local newspaper interview, with the Bismarck Tribune.
We discussed that by helping others, we are really helping ourselves, something I had alluded to, up above. It can help to get our minds off of the pain, or any chronic illness, that we may be dealing with.
I realized that living with RA was going to be for life. It took me a long time to reach that point of acceptance. It did not happen overnight. As I said before, seeing others out there and the wonderful work that they are doing, spoke volumes.
Yes, I was told if I took this joint supplement, that all of my pain would go away. That was not the case. I decided that after working with Seth, that this was something that I wanted to dedicate my life to, and that was becoming a true patient advocate.
So my best advice that I ever received was not really through words, but rather through action. That my friends, is powerful!
I want to share a photo that was taken right before my local TV interview, with NBC ND News. It has become one of my favorites and a great memory of the day, I truly started my path to advocacy.
Trevor & Brenda

Thursday, September 29, 2016

My Personal Tale of Pain Meds and Excerpts from A Tale of Tragedy...

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 who have seizures,
for which this has helped.

The other thing is the use of narcotics. Some who use these, are not ADDICTS! They know
how to use them, as for some, this is the only quality of life. Now the real tragedy is,
when you enter your pharmacy and you are told that you are restricted to the amount
that you can receive. She realizes there are drug seekers out there, but why should the
rest of the population who uses narcotics responsibly, have to suffer? This makes her
blood boil. Brenda herself does not use narcotics, but that is not to say, that there may
come a time, when she may have to. Brenda does however, suffer with chronic
motion issues, since her brain surgery. Her nausea is really bad some days and I
am really concerned, she may fall and hurt herself, when she feels unsteady. She has
tried, but it has been unsuccessful, with going to a balance clinic, as she could not
even complete the tests, as she became so sick. There is definitely a problem, but
they just cannot seem to get to the bottom of it. She would like the chance to see if
trying marijuana could at least alleviate this. She is not talking about smoking it,
but to get it in another form and just enough to help with relief. I want to ask our
readers, do you live with vertigo or constant nausea? We are talking every day.
Brenda doesn't live with vertigo, as she was tested for that, but the nausea is a
horrible thing to live with. There are days when Brenda just has such a hard time
dealing with this. Brenda does live with chronic pain, so she does truly
understand, what others are up against in this battle.

So ask yourself, if you or someone you love suddenly was diagnosed with an
inflammatory condition, that would be chronic, wouldn't you want them to be
comfortable? Of course you would.

I know we are definitely stepping on some toes here. We really do not care about
that. Brenda believes that we should all have a chance, at a quality of life. If you
firmly believe that we only want these drugs to get high, when we only want
relief from our pain, than that my friends, is the real tragedy.

I am going to stop there, as we hopefully have given you a lot to digest.

I thought this was the best way to present our perspective on this issue.

Just an update on my vertigo issue: On September 26, 2014, I landed in the ER with an attack of what was confirmed to be benign positional vertigo or BPV. Just to illustrate how serious it can be, I have to have a pillow when my chair is tilted back at the dentist, as my head starts to feel it. That was noted in my chart yesterday, when I was there for a tooth to be fixed. I can no longer have my hair shampooed at the beauty salon, as that involves tilting it back. I shampoo it myself, while standing in the shower, prior to getting my haircut. I am fortunate, to have an understanding hairstylist who gets it.

So on top of the constant nausea and the occasional vertigo attacks, I would very much like some kind of relief, as was mentioned above.

Quality of life is not too much to ask, when we are forced to engage in this battle.