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

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.

Brenda





Wednesday, September 28, 2016

A Tale of My Path to Biologics...

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 option. Although it had proven to be successful for some, it took a long time for any results.

So we went on with other treatments. He was way ahead of his time with some. He was always willing to listen to my concerns. It took me almost a year to decide, to even consider the possibility of a biologic.

I started to do my research on Enbrel, as that was the biologic that had been mentioned. I knew that it was the first biologic out on the market. It had been FDA approved in 1998. Yes, I had done my research and was paying, more attention now. I thought this could be my chance to get my life back. This was in 2001. I had now been living with RA for almost 10 years.

After extensive research on another medication; Arava, one that my rheumatologist suggested. Yes, I eventually went back to him. He said, I could end up waiting for months to start Enbrel, even after I decided to try it. I decided to give Enbrel a whirl and told my PCP, that I was ready to consider it. I received the prescription for Arava, but I never had it filled.

You see at that time, you had to register for this biologic. Biologics are manufactured through a rigorous process with a protein. As I was doing my research, it was mentioned that Chinese Hamster's ovaries had been used. Enbrel blocks the TNF or the tumor necrosis factor, the molecule that was discovered by a scientist, Dr. Gale "Morrie" Granger. I will be forever grateful to him.

I had my first injection with Enbrel (etanercept) on April 20, 2001. It did not take that long after I had registered. In fact on Friday, April 13th of that year, and it was also Good Friday, I received a phone call, asking me if I would like to start taking Enbrel. It only took one week.

So I have now been taking Enbrel for over 15 years. It's my first biologic and it did give me my life back. I am still able to work full-time and this year, has been 25 years, since I was diagnosed with RA.

In 2013, I testified at our North Dakota State Capitol in Bismarck, where I reside. I was representing those who live with various inflammatory diseases such as RA. I had the pleasure of working with Allen Todd, who at that time was with The Global Healthy Living Foundation. We both testified in regard to the Biologics vs. Biosimilars debate. This was in the early stages of my becoming an advocate for the 50 State Network. https://www.50statenetwork.org/ Check it out and consider joining and adding your voice.

I also had a story published in Healthy Biologics about my taking a biologic. You can check it out here and scroll down to my story. http://healthybiologics.org/stories/

This is on March 11, 2013, the day that I testified.



That was a pretty great day for me. It was even greater, when I received the call from Allen, that the bill had passed. I know that we made a difference that day. My story was relatable, as I was representing the patient's voice. There is nothing stronger! My state now has a law in place, that protects patients like me, about being notified of whether I would be receiving a biologic or biosimilar, when I go to my pharmacy.

So my path to biologics may not be typical. When I was diagnosed in 1991, they were not even out on the market yet.

My advice to a newly diagnosed RA patient would be to, never give up hope. Do your research and become your own advocate. With all the modern technology, you have pretty much everything, at your fingertips. Taking a biologic was the best decision that I ever ended up making and it truly changed my life with RA...

Here I am with the Chairman of the House Human Services Committee, Robin Weisz, who is from my home area. It was wonderful to be able to testify before this committee. I could tell, that my story was resonating with those in the room.


My biologic changed my life in so many ways. As I mentioned before, 15+ years is rare, to still be taking the first one. Becoming an advocate and fighting for those who feel that they have no voice, is all part of that package.

Brenda

























Tuesday, September 27, 2016

Tale of an Active RA Patient...

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 to do something, anything to make my life better. I was in the first ten years of living with this disease. I have to tell you in all honesty, that it was pure HELL at times.

I would wake up in the middle of the night with my knee so swollen and wanting to scream. I live in an apartment complex, so that probably would not have been a good idea.

I would talk to my PCP about different supplements and one in particular was ginger root. My mother, who has since passed, found some ginger candy root for me, as I was dealing with so much nausea from the Methotrexate. As I mentioned yesterday, no one mentioned the use of folic acid to help counteract that side effect.

Finally I found some ginger root pills, that seemed to help for a time, along with ginseng, to help with energy, not that it really ever did. I was dragging pretty much every day. I never took any of these supplements without my PCP's approval. I found after a time, that they acted like a blood thinner. I was once told that if I were ever in a car accident, that I could possibly bleed to death, as when I bleed, I have a hard time with my blood clotting. I had to eventually stop taking those on a regular basis, as I was starting to develop heartburn.

I had pretty much tried every NSAID on the market and all with disastrous results. I guess that I shouldn't have been surprised that years later, I would end up with two stomach ulcers, although they were small, but they caused a lot of grief.

I never gave up hope and kept looking for something that would give me some kind of relief. Not a cure, as I knew there was no cure for RA. I of course was told by some, if I had enough faith, I would indeed be healed.

That is the worst thing you can tell someone. Let me tell you a bit about RA if you don't know already. It is a disease that attacks your immune system. Anything can occur, any organ can be attacked or joint at any time. You have no control what this disease can do to you. All you can do is choose how you will handle it, when anything happens. That is a big difference. It has nothing to do with how much faith you possess. Some things in this life just happen, plain and simple.

I know that I may have gotten off the track a bit, but that needed to be addressed. Anyway, I have become that active patient over the years. Most of my medical team will tell you, that I am very knowledgeable, when it comes to living with RA. Of course, you are given a free education, but you end up paying the loans, with health insurance and the high cost of medicines.

To show you what I mean by becoming that active patient. Six months ago I had my visit with my rheumy, the term we use for our rheumatologist. At that time I asked her, for my next set of lab tests, if we could add on the Sed Rate or Sedimentation Rate. That my friends, helps to gauge any disease activity that may be going on, such as a recent infection or inflammation of the joints.

Yesterday I had my six month check with my rheumy and I also had some lab tests done a couple of weeks ago. We always make sure, we have those close to my visit. Anyway, lo and behold my Sed Rate was high with the number being 74. I had it checked with my PCP, for my annual physical. Yes, I want it checked then too. It was only 21. Normal being less than 30. My PCP even put in his letter that I had that requested as well as my Vitamin D level.

I was actually told by my rheumatologist's office that having a low Vitamin D level, can be a cause for more joint pain. In my case that is true. I was in the low teen's when I was checked. I have managed to get it up to about 44 and it has made a world of difference. I even asked if we could try upping my IU's (International Units) when it was not quite were it should've been. He agreed and it finally is at a level that is comfortable. Being that I take a biologic, something we will be covering this week as well, it is important that that level not become too high. It can cause kidney or liver damage. Just because it's natural, doesn't mean you can take whatever or how much you want, without always consulting your medical provider first.

Anytime I have found something, now that I own a computer. Joined the ranks in 1999, the year that CreakyJoints was founded. A little trivia for my RA and arthritis community. Back to my research on the computer, I will go into this in detail, later this week with another prompt on biologics.

Yes, I have become that active patient. I am not afraid to ask for any test. I explain my reasoning for wanting it. My case in point I asked for a CT for my head pain, because I knew something was wrong. Never in my wildest dreams, did I ever think that a brain tumor would be found, but it was. Here we are eight years later, a brain tumor survivor. Thought I would give you a little background about the name of this blog; Brenda's Brainstorm & Trevor, who is my storyteller, for our tales.

Living with RA and becoming a BT survivor have continued to connect. This blog started as a result of my becoming a BT survivor. I am much more passionate about everything. That includes my role as an active patient. My journey continues...

Monday, September 26, 2016

A Tale of the First Days with RA...

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 doctors and specialists to get a handle on this. I even had to quit working for a time, as I was in so much pain and could not function. The plan was for me to go to Mayo Clinic in Rochester, Minnesota, but I needed to have good insurance.

I was able to work a part-time job, to at least help me get by. It eventually worked into a full-time position at the clinic, where I am currently employed. That was twenty eight years ago. I went to Mayo Clinic after my probationary period was over and I now had good insurance.

I saw a rheumatologist there and all I basically was told, was that my blood fats were too damn high. His words. I had never been spoken to like this before, from any physician, so to hear this from someone at the World Famous Mayo Clinic, took me for a loop.

He didn't even do a rheumatoid factor, which would have certainly been high. I knew nothing about a test like that at the time, so who was I to question? I went to a pain clinic and got injected again, with cortisone, but it only felt better until it wore off. I went home with no definitive answer, as to how I was supposed to tolerate this pain, possibly for the rest of my life.

I did however, have a friend, who was also one of the vascular surgeons, I was a receptionist for at the time. He went to the ends of the earth, to find another surgeon that could help me. It was in November of that year, almost at Thanksgiving that he did. A heart surgeon performed a procedure and removed several cartilages from the costochondral junction. I have about a five inch scar to prove it. We all thought, this was going to be the answer to my problem. Little did we know, that the RA had been cooking up all along.

So now that you have some background, let me continue with the early days of living with RA. I had been having problems walking, as my ankles were so swollen, it was hard to get into a decent pair of shoes. My feet hurt, so I was buying expensive shoes, as that was recommended. I was told that I probably had plantar fasciitis, although it was never confirmed, as I didn't see a podiatrist at the time.

My fingers and wrists were also involved. My left pinkie acted as a trigger finger, that I had to pull back, with my fingers on my other hand. I was also experiencing bursitis, involving my left shoulder. This was several months prior to my diagnosis of RA.

I ended up seeing another physician, because my PCP was not available. This physician did several tests and this is where I finally heard about a rheumatoid factor test. He also did an ANA, because he was suspecting lupus. The RA factor was high, but the ANA test was negative. Still no definitive diagnosis.

I was pretty much walking around in a fog and not long after, had to start using my father's cane. I was walking to work, but I needed that assistance. This was getting serious by the day.

Now getting back to when I walked out of the rheumatologist's office on that dark Wednesday morning, I had to go back to work. I wasn't even sure how to process this, How was I going to tell my supervisor?

The rheumatologist not long after suggested that I go on disability. I told him that I was sole breadwinner and would work, until I couldn't work. Although at that time, I was sure that was the road that I would be going down soon.

I pretty much cried that first month, as I had mentioned before, that I thought my life was OVER, as I knew it. My PCP and rheumatologist knew they had to treat this aggressively, so methotrexate was the choice and also NSAIDS.  As we all know, these are nasty things to have to deal with in living with this disease.

You feel helpless. You want to get better, so you do what your doctor tells you to do. It seemed to work for a time, but then it started to do nasty things to my body. I ended up with sores on my scalp, even something under my right foot, that looked like a wart. I was even told that I had athletes foot. It became so bad, that it tore all of my stockings, because it was so rough. Funny thing is, when I stopped taking the methotrexate, it suddenly went away.

I had been on it for over four and a half years and could not tolerate it anymore. I tried putting it in yogurt, as it was being injected now. I was developing so much scar tissue, that we had to stop injections in my skin. I could not tolerate the pills, so we tried every possible avenue to make it tolerable. No one, not even my rheumatologist, who I had at that time, mentioned the use of folic acid, to help with nausea. I finally decided to wean myself off of the methotrexate. I would not recommend this, but I felt at the time, that it was my only way out. I told my PCP three months later.

I wanted my life back, not like it had been hijacked, in the early days of living with RA. I wanted to be able to exercise again. I was doing full range of motion exercises, twice a day, as I started that pretty much in the beginning. I found that keeping my joints mobile, helped me feel a bit better.

Thinking of getting out of a chair after sitting for so long, was pure agony. It took everything I had to perform such a task. This was only the beginning of what was ahead of me. So much has changed. There was no social media to reach out to. I tried a local arthritis support group, but truth be told, it was not really of any support. All I experienced, was what I afraid that I would become, and at that stage of my life, that was something that I was not able to face.

How was I going to live with RA for the rest of my life? This was only the beginning. The first dark days of coping...


Saturday, September 10, 2016

Tale of a Co-author...

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 frontal lobe syndrome, so this was only natural.

Never in her wildest dreams, did she ever think that this would be happening, at this stage of her life. Her brain tumor experience, changed so much for her. It helped to put into perspective, how she would go on living with her other challenge, rheumatoid arthritis (RA).

You can read about all of this and more in the book, as she goes into great detail. Some of it is raw, as you will discover with the other stories as well. They poured their hearts and souls into this project. Brenda told me at times, that it was difficult to deal with. She knew that forging ahead was the only way, to get this accomplished.

Brenda has a lot of people to thank, and the person who encouraged and told her that she was a good writer, is none other than, Rich Woods. He was there after she had her craniotomy, as she connected with him in another online group, that is no longer in existence. She has remained friends with him and she even received an acknowledgement, in his second book. I've never met this fella, but that is pretty cool in my doggie book. BOL

Brenda could not have even considered doing such a project, if it had not been for her online writing course, that she took, three years ago. That helped her learn to write much more in depth with the personal aspects of her life.

She joined the Grief Diaries Village at the end of last year. She contributed to another book in the series; Grief Diaries: Loss of Health, where she shared her brain tumor and rheumatoid arthritis journeys. It was after, that she was approached about participating in a book about traumatic brain injuries, brain injuries, acquired brain injuries, strokes and brain tumors.

Brenda gave it some serious thought and took it one step further, and decided to sign on as a co-author. She knew she had a lot to bring to the table, and this was the perfect opportunity. It felt right and she went full steam ahead.

She was actually told that with her contributing to the first book, that her story became someone's voice, in understanding what they had gone through. That is Powerful, folks!

She even had the pleasure of working with one of her fellow meningioma brain tumor sisters, on this project, as she was a contributor. Her story is pretty powerful, check it out!

I want to end with sharing the link to this book. If you know of someone who may be interested in reading it, please feel free to pass this along.

https://amzn.com/1944328327



This is Trevor, offering my sincerest Congratulations to Brenda... and to everyone involved in this great endeavor. You all Rock, in my doggie book. BOL

Sunday, August 21, 2016

Brenda's Brain and Trevor's Tale...

Hi, it's Trevor here with our monthly tale. This one is going to be unique. It will be broken down in two parts. I will share first and then Brenda will finish. The title for this particular post, came from a co-worker. Brenda thought it was a great time to use it.

Brenda started this blog in 2009, almost one year, after having her brain tumor removed, or the correct name for this procedure, a craniotomy. One of the gifts she received from this whole experience, was being able to write. The original title for this blog was; Brenda's Brainstorm: (A Inspiration Out of the Blue).

As you know, Brenda has been a brain tumor survivor, for almost eight years. She had a right frontal lobe meningioma which was found on an MRI on August 26, 2008. It turned out to be non-malignant. She no longer refers to it as benign, as the connotation is confusing. Benign doesn't necessarily mean harmless. Even though 90% of these types of brain tumors are benign, they are still many things that can go wrong. She has a friend, who had to learn to walk all over again, from a harmless meningioma.

Brenda still experiences a lot of motion issues at times and nausea. Imagine, dealing with that pretty much every day. It is hard to deal with and you still have to go on with your activities. Brenda continues to work full-time. She also lives with rheumatoid arthritis (RA), so try to imagine that on top of dealing with motion issues.

Along with the brain tumor experience came another gift, Frontal Lobe Syndrome. It is real folks, and was very scary in the early stages, because Brenda did not know what was going on. She thought she was possibly going bonkers, as she would cry for no reason. It turns out that the location of her brain tumor or the right frontal lobe, is the high functioning level of the brain. It can cause a person to react quickly with anger or tears.

This has also caused Brenda to possess more empathy for others and even herself. She has met some wonderful people, in person and online, during this journey.

She has been writing about this more. She joined a wonderful group of writers, last November and has been enjoying this experience, immensely. It's the Grief Diaries, where all the writers share their journeys. Their motto is; "Healing hearts by sharing journeys" Here is the link for that wonderful site.
http://www.griefdiaries.com/

Brenda has connected with some wonderful people. She has contributed to two books in the series; Grief Diaries: Loss of Health and Grief Diaries: How to Help the Newly Bereaved. She is co-author of another book, Grief Diaries: Living with a Brain Injury, which is due for release soon. I'm a dog so I don't know what soon means, but I cannot wait for it to come out. Brenda has been working hard this winter with writing. She loves to write and I couldn't be happier for her. Brenda will now share the second part of this blog.
 
 
 
This is Trevor, my storyteller. He has been on board since 2011. I thought it would be kind of interesting to have stories told, with a golden retriever's point of view. It was originally, Trevor's Tales as he was Trevor, The Tell Tale Dog. It has since been changed to Brenda's Brainstorm & Trevor, because by now, you all know who he is. He began telling tales of my mother's journey in the nursing home and leading up to her passing. We have used the word *Tale* in every title, since he joined me in February of 2011. His dog collar was made by my mother, just before she became ill and had to go into the nursing home. It is special because the purple ribbon was my from my sister Bev's sewing kit, that my mother received, after her passing from colon cancer in 2003. It is purple, because that is the awareness color for meningiomas. It has two dog bone charms and TT for Trevor's Tales. This is also the photo that was used in my first published blog post in 2012. It was titled; A Tale of 21 Years, sharing my journey of living with RA. This blog is all about awareness and hope. We thought it would be fun to give you a dog's eye view (see what I did there?)
 
I know many of you enjoy Trevor, and for the longest time, you even thought he was real. We had quite a conversation about this with my friend, Rick Franzo, during his show; Brain Tumor Talk: Worldwide Radio Show, when I was a guest via telephone. I was however, able to share about my brain tumor and rheumatoid arthritis (RA) journeys. That was pretty cool!
 
Trevor is my helper in so many ways. He has been featured in several 'Tumors Suck' videos and also offers encouragement with his tales. We have really tried to make them once a month and so far this year, we have succeeded. We hope you have enjoyed this. Now you know the whole story behind our blog. It all started with a brainstorm and ended with a tale.
We wish you all good health and happiness, until next time.
 
Brenda & Trevor
 
 
 
 
 

Saturday, July 23, 2016

A Tale of Frustration

Hi, it's Trevor once again, sharing our monthly tale. This time is going to be a bit different. We warn our readers, that it may be a bit raw, as honesty can sometimes cause some people to become uncomfortable. That's okay, because we all need to be awakened at times.

Brenda has been going through some tough struggles as of late. As you know she has lived with rheumatoid arthritis (RA) for over twenty-five years and is almost an eight-year brain tumor survivor. That is a lot to deal with. Imagine, dealing with most of that on your own? Brenda does and it is difficult at times. We are not saying anything here to make anyone feel bad. We are simply bringing out some facts here.

Brenda has not been feeling that great. Our weather has been hot this week. Her fingers are so swollen and she pretty much has been hurting all over. She continues to do her walking to and from work, all five days. I am so proud of her. Yes, she walks in that hot weather too.

Her fatigue is out of control. Last evening she was in bed before seven o'clock. On a Friday night, that is crazy. Her work week is over and she should be doing something fun, not heading for bed, because of exhaustion, but she was.

Her blood pressure is finally at the point, where she thinks this new medication is working. Her hypothyroidism has changed in that she needed to be put on a higher dose. She doesn't just deal with RA and her BT issues. There is a lot more behind the scenes. I am sure it is that way with many people who live with chronic diseases.

Brenda somehow, does not feel like she belongs in that realm with others. It's more like a country club and you only belong, if you share every aspect of living with your chronic illness. Brenda does not want to do that. It's not healthy and there is more to life and ourselves, than what we struggle with every day.

Brenda wants to be included in fun activities. She went to a rock concert this summer, which she enjoyed so much. Yes, she got up and danced. She ended up paying for it, later in the week, but she needed to get out and have some fun. At the time, she wasn't thinking about what would happen in the next couple of days. She was living in the moment and having the time of her life. Isn't that the title of a song? BOL

Brenda will not be going anywhere as far as a vacation is concerned. She has managed to take a few days off, or have mini staycations. She can no longer travel in an airplane, as they cannot seem to get to the bottom of her vertigo issues. This is frustrating for Brenda, as many other things are.

She has been working on writing projects and doing much more journaling, as of late. Writing is a coping mechanism for Brenda. Even though it bothers her fingers at times, she feels it is paramount to keep doing it, to help with exercising them.

Brenda has been doing some decorating in her apartment. The living room was first and now she has four pillows with golden retrieves and poetry on each one. Why am I not surprised that she picked that particular breed? BOL The poetry has a special place in her heart. Her mother, who I had the great honor of getting to know, wrote poetry. Neither of us knew this, until after her passing. She did however, make me a dog collar, right before she became ill. I still wear it and treasure it.

Brenda has been missing her mother so much. She has so many things going on and she could always talk to her. She would really like to be able to share all of the wonderful things that have been going on. It seems like nobody wants to hear about it. It comes across as bragging to some. I am so doggone proud that Brenda is going to have a book published where she is a co-author. That is huge in my doggie book. I hear that good old Trevor here, is even mentioned. That warms my golden heart. BOL

Life is full of challenges, but it can be great at times too. So much sadness in our world today. We need to be able to escape and find what fulfills us. Dwelling on our problems all of the time, is not the answer.

Brenda enjoys her walks so much. That is one thing that she can continue to do, to help keep her joints strong and flexible. With RA is it important that you keep moving, even a little bit. If you can only walk down the street or around the block, that is okay. You are doing something. If you can only exercise while sitting in a chair and cannot get down on the floor, that is okay. I will let you all in on a little secret. Brenda cannot get down on the floor to exercise. She lives alone and to chance that and not being able to get up, would not be good.

You find what works for you. She can exercise with lying on her bed and doing full range of motion. She has done this, pretty much every day for the years, she has lived with RA. It is something. Don't beat yourself up, for not being able to do it all. Brenda becomes frustrated, but she keeps telling herself that she is doing something and that is okay.

When you live with a chronic illness, it is sometimes hard to feel like you fit in. You are fatigued and you hurt all over. You want to get home and crash. It's frustrating, because Brenda wants to be able to do fun things and not always having to decline invites.

She had plans to possibly go to the mall today and work on her project for another room. She was too tired and hurting so much, to even consider it. She ended up taking another nap after lunch, as she couldn't even stay awake while watching a little TV.

She had an invite to dinner with her girlfriend this evening and had to decline, as she is in so much pain. She understood, but Brenda would really like to have gone. You have to be smart and not push yourself, when you are hurting. She has been moving around the apartment, but not much else today.

We are hoping tomorrow will be better and perhaps, she can do what she had planned for today. You always need hope, that it will get better with time. Brenda tries not to beat herself up, when she has to change her plans or decline invites. You need to be flexible and have common sense, when it comes to living with a chronic illness. Those who care, will truly understand this. She has encountered the opposite of those who take it personally, when she has had to decline. If she went out, even when she did not want to or felt she couldn't, then she was accused of being crabby, if she ended up sharing, that she was not feeling well.

Now you tell me, if you had a headache or did not feel well, would you be happy to be forced to come along, just to not hurt the other person's feelings? I think you might be a bit crabby as well. Stop and think what that person might be going through. They are not living with a chronic illness, to spite you. Brenda fights every day. There are things that you can't even begin to imagine what she goes through on a daily basis. She has listened to woes and complaints from others, but when the tables were turned, some turned a deaf ear.

They are no longer a part of her life. Friendships need to be a two-way street. There is a saying, "In order to have a friend, you need to be a friend." It goes both ways.

Isolation is a big part of living with a chronic illness. It seems like Brenda experiences that more and more. When you are constantly barraged with being ignored, when everyone else is greeted. Yes, it has happened. It hurts and if those other people were really your friends or had your back, wouldn't they do something about it? No, they let it happen day after day. It has even happened in settings where people are all dealing with chronic illnesses. She has been completely ignored.

When you live with a chronic illness, you definitely possess less energy. If you go to all of the trouble of doing something for someone, only to have them say, "I don't need this information now." Why did you ask for it, in the first place? Energy is not something that just magically appears. There are times you may have plenty and then there are other times, where you can hardly wait to crawl into bed.

Brenda no longer apologizes if she cannot handle a task or do everything. Realistically, no one can do everything. Brenda is involved with one source of social media. That is Facebook. She realizes, that she might get more exposure when it comes to advocacy, if she would participate more, but she simply cannot handle the rest. She works forty hours a week and that is about all that she can handle. She is grateful that she can go to work early, as that is when she is at her best.

Brenda didn't ask for any of this to happen. There are people out there that actually believe that we create our own chronic illnesses. If that were true, shouldn't we be able to cure ourselves also? BOL

Brenda works hard every day to fight. If that means a day of rest, she is still fighting. Common sense comes along with that as well. You need to know when to rest and what you can handle. You learn that as the years go by. Twenty-five years is a long time to be living with a chronic illness and Brenda has done the best she can.

Her barometer head has been something else this week. Yes, there is such a thing. Anyone who lives with arthritis knows, when the weather is going to change. It's that way with brain tumor survivors as well. Barometric pressure and humidity, have a lot to do, with how Brenda may be doing, on any given day.

It's been a frustrating summer for Brenda. We have had some wacky weather and each time, she has paid for it. She has been in a lot more pain. Just because you take something every week, does not mean it automatically goes away. The pain is still there. Pain has many forms. It does not have to be just with living with a chronic illness. It can also be the isolation of having to deal with all of this alone.

Fatigue has been a big factor with Brenda. She is hoping in time that the medication for her hypothyroidism will level off and she will start to gain a bit more energy.

Long range planning is not really ideal for Brenda. She never knows how she will be feeling that day. You take it day by day, and moment by moment and hope for the best.

Until next time, this is Trevor, signing off.



Saturday, June 4, 2016

A Tale of Jury Duty

Hi, it's Trevor to bring you another tale of Brenda's life. This time, is going to be about her recent experience as a juror.

She was summoned to report to her county district courthouse on June 2, 2016 at 8:30 a.m. She had to call in the night before, to make sure that the trial was still scheduled. She found out that it was and where she would need to report the following morning.

So on the morning of June 2, 2016, she arrived at the courthouse in plenty of time, as she did not want to be late. This was a new experience for Brenda. She had been summoned for jury duty before, but the cases had always settled out of court. She was a bit apprehensive, as this was completely out of her realm of comfort.

When she arrived, the first thing she had to do was to have her purse scanned. No buzzers went off, so she was free to go upstairs to the 3rd floor. Brenda told me that one of the great things about this was, that the weather was perfect, as she walked the mile to the courthouse and then during the day, climbed those stairs several times. It was great exercise for her rheumatoid arthritis (RA) and also was great stimulation for her brain.

She entered the courtroom, and was completely surprised. It reminded her of a church, as there were benches where she would be seated, along with the other perspective jurors, that reminded her of pews.

Very ornate architecture. It reminded her, of when she toured Mayo Clinic, back in 1988, as it was the same, in some ways. So there were a few people there already. I guess they didn't want to be later either.

Brenda had to take off work for this. It is required by law, that your employer lets you perform this duty, if you are selected. In Brenda's case, it would be two days. More on that later.

When they got ready to start, they all had to rise, in respect to the judge, who had entered the room. They were then, asked to be seated. It was beginning now. Brenda was in awe of this whole experience, but never in her wildest dreams, did she imagine that she would be called to the jury box, be interviewed and then selected as a juror, but she was.

To backtrack a bit, the Defense Attorney and Assistant State's Attorney, introduced themselves. The defendant was also in the courtroom. Sorry, I got a little off course there. BOL

If you were called to the jury box, the first thing you did was state your name and tell a little about your background. In Brenda's case, it was her name, how long she's been living in her present city, where she was employed and for how long, and that she was single. The judge proceeded to ask her, what she did at her present job.

She was then interviewed by both the Defense Attorney and the Assistant State's Attorney. One of the first questions was if she was going to be bothered by the nature of this case? She said no. She figured she had gotten this far, she was going to go full steam ahead. When the Defense Attorney questioned her, she felt like she was being cross examined. She stuck to her guns and said before, she would be able to make a decision on whether the defendant would be guilty or not guilty, she would have to weigh all the evidence. Apparently, that was the right thing to say. She and some of the other jurors were told that they were selected and to go back to the room, where they would end up deliberating after the trial had ended.

This room had a large table and chairs all around. It was really quite nice. There were all kinds of snacks on the table. They were even told they could help themselves, to coffee, bottled water or pop, that was stored in the fridge.

One of the first things that they were told, was that they could contact anyone, if they needed to do so. Brenda had to call two people. She was to be filling in for another department during the noon hour, but it was obvious, that this was not going to happen. She also called her department to let them know, that she would not be back until Monday, as it was going to be a two day trial.

So the rest of the jurors were selected, including an alternate, in the event that one of them would not be able to come the next day, for one reason or another. Being there was an alternate, they were told that one of them, would probably not be deliberating with the others, as there are only 12 on a jury. They had no idea who that would be, but it had already been decided.

So when all the jurors were selected, they all came back to the jury box to begin the trial. Opening statements were given, by both the Assistant States Attorney and Defense Attorney, to give them some background, as to how this case was going to go. They recessed for lunch, were told not to talk to anyone about this case and not to loiter in the courthouse, but to come straight back to their room, before they would reconvene in the afternoon.

I can only imagine, how much fun this would have been, especially with all the objections, sustained and overruled that Brenda would get to hear. Yes, I love my lawyer programs. She told me, that it was nothing like Law and Order. BOL

So the afternoon court was now in session. This is when it began to really get intense. They listened to several testimonies. One was from a detective working on the case. Another one was an expert witness and this is where they had to look at many exhibits. It was pretty close to 4:00 p.m. when the judge said, that this was obviously going to take another day. So the jurors decided on the time and they were adjourned.

Brenda was pretty tired by the end of that day, but she managed to walk that mile home again. They were not to form any opinions or talk with anyone about this case, or even search the Internet, regarding details from this case.

The next morning she walked to the courthouse again and had her purse scanned. She knew where to go this time, as she told the person, when she came in, that she was one of the jurors from a trial that began yesterday.

Court began and it was at that time, that the alternate juror was announced and thanked for their service, and told that they could remain for the rest of the trial. It was the last juror who was selected. The only thing they were not able to do was to deliberate and help the others form their verdict.

So the next phase was to go on. There were no more witnesses, so it was time to hear the closing arguments from the Assistant States Attorney and then the Defense Attorney.

After the jurors heard both of those, they were instructed to go to the room to deliberate and to come back with a verdict.

All the evidence had now been given, so it was just a matter of looking at some of it again and coming to a conclusion, on how this was all going to play out.

First they elected a foreman or spokesperson, who would hand the verdict to the bailiff, when they again, entered the jury box. They next went through the checklist and they all agreed that everything was there. Next was to decide on a piece of evidence, that would help them make their decision on whether this defendant was guilty or innocent. It was an unanimous decision and the defendant was found guilty by all of the jurors. They went around the table, each giving their response.

They then entered the jury box and the verdict was handed to the bailiff, who in turn, handed it to the judge. A verdict of guilty was read. The Defense Attorney wanted a poll from each juror, so the judge asked each of the jurors, if this was their true verdict. They all responded again, with YES.

This was a difficult case in many aspects for Brenda, but at the same time, very rewarding as well. They even got to speak with the Assistant States Attorney after and were able to ask questions and now they were able to speak freely, so it turned out to be a great dialogue.

Brenda enjoyed this experience as a whole and has gained a new appreciation for the judicial system and how the whole process works.

This is Trevor until next time, This court is now adjourned! BOL

Sunday, May 29, 2016

A Tale of Longing...

Hi, Trevor here once again, to bring you our monthly blog post. It has been a busy month for Brenda, as she has been spreading awareness for arthritis and brain tumors.

It has now been twenty-five years, since she was diagnosed with rheumatoid arthritis (RA). but she believes she has lived with it much longer.

She is almost an eight-year brain tumor survivor. She is already making plans for her next Craniversary, a word that is used instead of anniversary, as she had a craniotomy. I think if I would have had one of those, I would celebrate too. BOL

Arthritis is the #1 cause of disability in the United States. Brenda has defied the odds, as she is still working full time after twenty-five years. She will be celebrating twenty-eight years of being employed with the clinic, next Thursday. That is pretty pawsome in my book. BOL

She has been writing a great deal, as she has contributed to two books in the Grief Diaries Anthology Series. I don't like to brag, but she is also working on a book, where she will be a co-author. It's titled: "Living with a Brain Injury" and it's due for release this summer. Imagine, being able to share your own brain tumor journey with others and making a difference. Brenda certainly is.

I am so dog gone proud of Brenda and all that she is doing to spread awareness. She longs to be included in the chronic illness community. Something she feels very strongly about, hence the title for this tale.

Brenda choses to live her life with positivity. That seems to put some people off. She is in pain pretty much twenty-four seven, but you will not hear her complain about it all of the time. What is the point? Is it really going to help you feel better? No!

Brenda has to spend a lot of time alone. We are talking holidays too. Think that is easy? No! She makes the best out of all that is thrown at her. Lately, that has been a lot. She recently had her annual physical and some changes have taken place. If it were not enough to already deal with RA and the constant motion issues, then to have more things thrown at you.

She has had a stressful year and I guess it has finally caught up with her. She is back on blood pressure medication, as it has been high in the past few months. Brenda was sure, that was mentioned at the beginning of her visit. It is working, because on her next visit, it was taken and it was back to normal again. She is adjusting and at times, not feeling the greatest. She realizes it will take some time to get used to something new in her body.

They talked about it and some of it, could be the fact that she has gone through menopause and some other changes have taken place. She exercises, but weight is not as easy to take off. It's frustrating and something that she does not talk about much. What's the point really? She is exhausted so much of the time. Her fatigue issues have gotten much worse.

She had come to the conclusion, that she can only handle one thing to do, when she goes out. If that is shopping, so be it. If it is going out for coffee and maybe doing a little walking. No more of running around to several places, it just tires her out so.

If you don't live with chronic pain, then you truly do not understand what it is like. She describes it, as walking around dragging a ball and chain. We may have mentioned it before, but it certainly won't hurt, if we share it again.

Brenda does as much, if not more at times in spreading awareness. It seems that it does not get acknowledged or even something she has sent in, to even get shared. When you have limited energy already, this gets old pretty quick.

She knows where she is appreciated and therefore, some changes are going to be made, in where she will continue to share her support. That includes financial support as well.

She always hears this saying; "You are not alone." Not true, because so many times, she is.

That is where the longing comes in. We left it as something, for you to think about. Where would you like to belong and truly make a difference?

Brenda already knows, but would also like to be given a real chance at it.

We leave you with this; We all go through different struggles in life, so why can't we all come together and support one another, no matter what that might be? In joy or in pain, let's be there for one another.

This is Trevor, signing off. BOL

Saturday, April 30, 2016

A Tale of Isolation

Hi, it's Trevor once again, bringing you another tale. We have really tried to share one a month and so far this year, it has happened.

This time is going to be about something that Brenda struggles with and that is isolation. When you live with a chronic illness or in Brenda's case, more than one challenge, it can be especially hard for some to understand.

Brenda wants to be social and have fun. There are some things that limit her activities. One is the fact that she struggles with benign positional vertigo (BPV) attacks, of which she never knows when one may occur. She hasn't been in an airplane in over five years, as her last experience is when the plane started to take off, her head began to feel funny and she became very sick. It was so bad that they wanted her to go to the ER, but Brenda fought it and rested. It gets better after she has had a chance to rest. Not everyone gets this and it is tiring for her to have to explain it over and over.

She would love to travel, but has come to the conclusion, that it probably is not in the cards to get into anymore airplanes. If only they could figure out what causes these attacks. It is very distressing for Brenda, because the medication that she takes can cause her to become irregular. She has tried going to a balance clinic, but she could not complete the tests, because she became so sick.

Not being able to get together with others, because of this, is hard for Brenda. She feels isolated, as it is. I am here, but that simply is not enough. You need people in your life to survive. She lives alone and that is something that has not been a choice, at this stage in her life. She simply has not met that one person or companion, that she could do activities with, or even go out for coffee or a drink.

Brenda tries so hard to remain positive and that seems to put some people off. It's on them. I encourage her to keep doing what does. She is helping more people, than she realizes. She has received messages asking for advice, so she knows, that others depend on her.

Brenda has limited energy, because of the fact that she lives with rheumatoid arthritis (RA) and is a brain tumor survivor. She has a lot she has to get through every day. She fights and I am so proud of how she continues to walk to and from work. She enjoys it so much.

She just completed another 5k walk the other evening. She even managed to break her record and did it in 50 minutes. That might not seem like a lot to you, but to her, this is one way to kick RA's butt and it is very satisfying for Brenda, to do so.

What we want to bring out in this tale, is even though it looks like Brenda has it all together, make no mistake, that she does become lonely at times. She is trying so hard to get involved and meet others, even if it is only online or a monthly conference call. It is interacting and that means so much to her.

She doesn't feel like she fits in with the chronic illness group, as they are always doing their own thing, and feels excluded.

She advocates for so many, but who really has her back? We are not trying to play the woe is me card here, by any means. We are being honest here with some heavy feelings. That is something that Brenda has experienced, since her brain surgery. Her feelings or emotions are much sharper. It's a brain thing and only those of you who have gone through this, would truly understand.

Even in the brain tumor community she feels isolated at times. Her procedure was not as long and as serious as some of her other fellow brain tumor survivors. She dislikes comparing, because after all, aren't we all on the same team or side?  I would certainly think so.

Tomorrow, starts the month of Arthritis and Brain Tumor Awareness. There are going to be a lot of campaigns out there for walks, contacting our legislators, which is all great. She will do her level best to participate in what she can handle.

Brenda feels like she has to do so much by herself, because no one around here, gets what she struggles with every day. She is thankful for social media and the friends she has made. She would like to be able to make some friends in the real world too, that she could lean on for support.

We are going to leave this time, with a question. How could you help someone, so that they don't feel so isolated, when dealing with a chronic illness? Brenda would really appreciate knowing, how you feel about this.

This is Trevor, barking off. BOL



Saturday, March 26, 2016

Tale of Struggling

Hi, it's Trevor here again, sharing another tale. This time is going to be a bit different. Brenda has been going through some real rough or in my world, ruff challenges, BOL as of late.

Brenda is just recovering from yet another bout of shingles. This makes her fourth time. If you are not aware what shingles are, here is a little information for you. If you had chickenpox as a child, as Brenda did, the shingles virus is already inside of you. It lies dormant for years and usually when you become an adult, 1 in 3 persons, will be attacked by this virus. As we have shared with you before, her first time was the worst. She now knows what to watch for. It still doesn't make it any easier to deal with.

They can really get on your nerves, so has a lot of other things with Brenda lately. She has been isolating herself, except to go to her job or other errands that may have to be attended to. She really has had less energy, since this all occurred. It's hard enough living with rheumatoid arthritis (RA) and also the other challenges, she has to deal with. There were actually others who were not aware, that she has been dealing with this. Brenda is not one to go around and tell every person, whenever she has a problem. She keeps a lot to herself and I encourage her, by having her tell me what she is dealing with, so we can share it here, with our readers. If it can help someone else, that is all that matters.

When you deal with something like shingles, anything can get on your nerves. Take living with chronic diseases for instance. All this talk about people putting notes on people's windshields who use a handicap hang tag in their car, just because they happen to think they don't need it. How would they even know for certain? Not all disabilities are noticeable. Brenda's handicap hang tag is for life, as her doctor at the time, felt that is what she needed. She only uses it when she needs it and no, it is not used just so they can have a convenient parking place.

So the next time you get that look from someone who doesn't think you need this kind of help, take a good look at them. Are they perhaps wearing glasses or even a hearing aid device? All of these things are for the sole purpose of helping out someone with a challenge. Brenda wears glasses and has since the first grade. She knows people who wear hearing aids and wouldn't have the audacity to even question, if they needed them or not. What is the difference? We all struggle in one way or another.

Some of what we struggle with, is not shown from the outside. Even behind our smiles, there is sadness.

If Brenda had to go back, to using her cane again, she would. She wore an air cast for six weeks, back in 2011 and not one person gave her grief. Yes, she was teased at the nursing home and called Hopalong Cassidy, but it was all in fun.

We realize that there are some individuals out there, that take advantage of the system and get these handicap hang tags only for convenience. There are those who pass off their dogs as Therapy and Service Dogs, also, but that is another story. You get, where I am digging here though? BOL

There are circumstances that are troubling to Brenda. One is when someone uses a handicap hang tag, when the person who it was issued to was not in the car. It has happened. Brenda and her mother had an experience one time, where they forgot to hang the tag up and lo and behold, there was a ticket on the windshield when they came out of the store. Brenda felt terrible and would of course pay the fine, no questions asked. Her mother did end up calling and explained that her daughter had a handicap hang tag issued to her. Want to know the proof folks? There is a number that is assigned on each hang tag, which identifies that it was legit. She did not end up having to pay the fine, which was a relief and also a lesson learned. We know you can get these hang tags off of the Internet, but all they display is a symbol of a wheelchair and the word Handicap. Anyone can get those. Brenda had to fill out an application form and have it signed by her physician. Funny thing about these cards, you used to have to pay for them, which turned out, there being a Class Action Suit and she was actually reimbursed, for almost double of what she had originally paid. She now gets them free, as they should be.

Think of any assisting device, there are many. Towel bars, chairs or anything to help you get around safely in your home. Brenda uses a chair in the shower, as she can no longer get into a tub, without assistance. She lives alone, so it is one of those things, you learn to adjust to. Is someone going to come into her living space and tell her that she does not need this chair? No!

It is estimated that 300,000 children in the United States, live with some form of arthritis. There are over 100 kinds, so it is hard to diagnose at times. Many of these children are in wheelchairs, have to uses braces and go through more than a child should ever have to endure. One thing they do not need, is your judgment. Many children are bullied, not teased. We live in a different world today. It is heartbreaking, to hear all of the stories, that these children have to go through. Some of these children are taken out of schools and homeschooled. Imagine the burden on the parents, to not only have to care for their child, but to have to be responsible for their education, because some made it impossible for their children to attend public schools. She has read and heard of stories where the teachers treat these children, as if they are faking. It makes Brenda's blood boil. Brenda dealt with an injury in third grade, where she tore some ligaments in her left knee. She was encouraged to help her strengthen it, by participating on walking on a plank. At the time, Brenda did not like this, but she has realized after all of these years, they were there to help. Never in her wildest dreams, did she think that she would be diagnosed with RA at the age of 31. She was told that she would probably develop arthritis in that knee, when she became older. It's been giving her problems again, since this whole saga of shingles. You see, she would could not take her biologic while there was any sort of an outbreak, so her RA has taken off with a vengeance.

We appreciate all the kind words and messages received, during this difficult time. Brenda is going to need some time to heal. She is not feeling very social right now, so please we ask, that you do not take it personal.

This is Trevor, until next time, barking off. BOL