A Twisted Tale

"You should go on disability and have your husband take care of you." 

Yes, that is what Brenda was told by her first rheumatologist, at the beginning of her rheumatoid arthritis (RA) journey. Thanks for the encouragement, right? What husband do you speak of? Brenda was the sole breadwinner. 

She told him, that she would work, until she no longer could. On June 2nd, Brenda will celebrate her 30th year work anniversary at the clinic, where she has been employed since 1988. She was diagnosed with RA in May of 1991, almost 3 years after her full-time employment began. You do the math! I would say that she has pretty much defied the odds on this one. Back when this all happened, it was the norm, that by 10 years, you would possibly become disabled and no longer be able to work. Arthritis is the #1 cause of disability in the United States. We share for this reason. 

If you did your math, Brenda has already defied those odds by 17 years. Nothing has ever been the norm with Brenda and she is good with that.

This being Arthritis and Brain Tumor Awareness Months, this blog is going to be in two parts. We are now sharing about her RA journey. 

Can you imagine hearing something so twisted, as what was shared in the first line up above? You get it now, don't you? BOL 

You were just diagnosed with a disease that you would somehow have to live with, for the rest of your life and that is all you got? Truth be told; Brenda was not actually even told out loud that she had RA. It went something like this. "I'm afraid, this is going to take a little longer, than we thought." Brenda was handed over a dozen pamphlets, as she left the rheumatologist's office that dark Wednesday morning in May of 1991. It was actually May 8th and she had her answer, it was rheumatoid arthritis (RA). 

Brenda was thirty-one at the time and thought her life was pretty much over. She had gone to that appointment by herself and now had to go back to work. She made the mistake of reaching out to someone, who couldn't have cared less about her. Brenda could hardly move or walk, by this time and yet, she was expected to meet this person, by having to walk a long way. She ended up slowly hanging up the phone during that conversation. It truly was a dark day. 

She told her supervisor at that time. Brenda was in transition of moving to a different department in the clinic. She had been a receptionist and was getting ready to move to the business office, to do a variety of duties. It couldn't have come at a worse time. 

When the word got out, the higher ups were already working on getting Brenda to only work part-time. If you know Brenda at all, you will find out, that she is a fighter. She fought hard to keep her job and to remain full-time. She was moved again to another position, but this time, was not asked, she was told, where she would go. 

She had done one duty off and on in the past positions, that she had and eventually moved into that department full-time. 

She had to be able to move and walk around, as she got so stiff. This is all going on, while trying different medications and anything to relieve the pain and stiffness. 

Four years after diagnosis she was moved to another position, where she could move around and have some variety. She remained in this position for nine years. Her RA was once again progressing and it was becoming apparent, that all the lifting that was required, was taking its toll on her joints, primarily her wrists.

Brenda started her biologic in April of 2001, so she had a chance to experience some improvement with her wrists. Years later in 2010, she underwent bilateral carpal tunnel release. All those years of repetitive motion, had finally taken its toll... on her wrists.  

She was moved to another department, where she has been since December of 2004. Brenda has managed to stay at the same place, with also having gained a lot of experience with all of these changes. In those cases, change was never a bad thing. The last change, was by far the hardest to get adjusted to, but in time, Brenda did. 

"If you are going to get a brain tumor, a meningioma is the best one to get." 

Yet, another twisted thing that was told to Brenda's mother after her craniotomy. No brain tumor is a good one to get. Anything in your head, should not be there in the first place. 

When Brenda first started on her brain tumor journey, she didn't even realize, that it was a brain tumor in the first place. It was presented as a mass, lesion or a meningioma. No one ever used the word brain tumor. Brenda often wonders, why she can never be told anything outright. Case in point; what was shared up above, not being told that she had RA. 

On August 26, 2008, Brenda underwent an MRI of the brain, as a mass or lesion had been detected with a head CT scan. btw; Brenda asked for that head CT in the first place. Another twisted thing that was said; "If we find nothing, we are done." Thanks for the support. 

A right frontal lobe meningioma, the size of a walnut, ended up being almost the size of a golf ball (after having had her craniotomy) was found on the MRI. The next step would be to see a neurologist. The same one who said almost a year before; "We could do a head CT, but more than likely, would not find anything." Really? Brenda had had a prior head injury, which we are not going to get into, as this is all shared in past blog posts, if you follow us. 

This was all after Brenda lost her father from Alzheimer's Disease. Could you even imagine going through something like this so soon after? Brenda believes in timing and obviously this was not the right time. 

Getting back to the next year. Brenda's head pain was becoming more persistent, and knew something was wrong. You just know!! It's your body after all. 

So it took several months after the procedure, to finally see this come to light or on a piece of paper.

Brenda had asked the neurosurgeon to have one of her work restrictions extended, which he was more than happy to do. Here's where the kicker comes in. He wrote on the piece of paper; "Had a brain tumor." He didn't write a menigioma, but brain tumor, the light finally went on. Brenda had a brain tumor. She again, was not actually told those words in person. 

Another thing that could make this confusing and it did for Brenda, was the fact that it was not invading her brain. A meningioma is outside with the meninges. A striking characteristic of a meningioma, is that there can be a tail. Brenda's definitely had a tail. You ever wonder why we use the word "Tale" in all of our blog posts? BOL They also used a Midas drill during her craniotomy. We have a joke about finding gold in there. You know what, I think they did. There would be no Brenda's Brainstorm or your good old friend, Trevor here, sharing these tales. 

Writing became a big part of Brenda's life about one year after her brain tumor journey began. She sat down at her computer one day and composed her first blog post. She had suddenly become creative. 

Maybe there is a reason why Arthritis and Brain Tumor Awareness Months both fall in May. With Brenda, she cannot separate the two. Her brain tumor experience changed a lot of things for Brenda. Her living with RA for over 17 years at that time, and still working full-time, proved to be a blessing. She did not have to have OT or PT after her craniotomy. All that moving she was doing all those years, paid off. 

Brenda has become a much braver person, with taking risks. Not anything harmful, but doing things that might have been out of her comfort zone, prior to her brain tumor experience. 

Brenda couldn't imagine becoming a writer, author, an advocate for RA as well as brain tumors.  Making that one pivotal phone call to CreakyJoints that one Monday evening, which further led to her standing behind a podium, testifying at the ND State Capitol on a very important issue, taking a biologic. It all continues to intersect for Brenda.  

Her life truly changed during that hour and a half on September 8, 2008. Brenda became a brain tumor survivor and warrior that very day. 

Brenda continues to experience ramifications from the brain surgery. Nausea and vertigo, just to mention a few. Frontal lobe syndrome came along for the ride, and that has truly turned out to be a blessing. If you don't understand this, we can't explain it. It just is!! Being able to feel emotions, even so deep at times, is better than feeling nothing at all. Brenda has been there as well. Again, we are not going to get into that. That could be for another day. 

This was created by her BT warrior sis.

I am so proud of Brenda and all that she has accomplished. She truly is a warrior who is a Brain Tumor Survivor, who lives with Rheumatoid Arthritis...fighting every day!! ~T Man~ 

This magnet was created by her
BT sis across the pond.
Brenda created the tagline.