Saturday, October 22, 2016

A Tale of Agony

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

                                                              ~Trevor & Brenda~

Saturday, October 8, 2016

Tale of a Talk Show...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing you all golden blessings!


Saturday, October 1, 2016

A Tale of Happiness

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

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

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

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

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

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

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

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

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

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

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

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

Friday, September 30, 2016

A Tale of Advice...

RA Blog Week; Day #5: WILDCARD  #1- Advice column -What is the best advice you’ve ever gotten, or advice you can give about how to live well with chronic disease and pain.

Today, I am going to share some of the advice that I have received. I have lived with RA for over twenty-five years, so I pretty much have heard it all. I am however, going to concentrate and share with you, something practical. I have always believed, that experience is our best teacher, as well as watching those who live by example. My late mother was a great one, in that regard.
I had the wonderful pleasure of meeting and working with one of the best patient advocates, who happens to also be my friend, Seth Ginsberg, who is the Co-founder and President of CreakyJoints.
It was in April of 2012, when Seth came to North Dakota, and helped me, with my work advocacy day.
We had a chance to spend some great quality time together. We talked about how it felt good to help others. I have since used his quote many times. "Helping others, really does help us feel better."
I don't know if you have ever had the pleasure of working with Seth, but he is one energized person, and you cannot help, but let that kind of energy flow to you. I even told him, that I felt so much different that day, as we had a lot to accomplish. It turned out to be a great day.
It was to commemorate my taking a biologic, my 11th Anniversary of taking Enbrel. I even got to pick the date, when he would come and work with me. Of course, it was April 20th, because that was also the same date, that I had my first injection of Enbrel in 2001.
It was a day filled with meetings, a local TV interview with NBC North Dakota News, and also a local newspaper interview, with the Bismarck Tribune.
We discussed that by helping others, we are really helping ourselves, something I had alluded to, up above. It can help to get our minds off of the pain, or any chronic illness, that we may be dealing with.
I realized that living with RA was going to be for life. It took me a long time to reach that point of acceptance. It did not happen overnight. As I said before, seeing others out there and the wonderful work that they are doing, spoke volumes.
Yes, I was told if I took this joint supplement, that all of my pain would go away. That was not the case. I decided that after working with Seth, that this was something that I wanted to dedicate my life to, and that was becoming a true patient advocate.
So my best advice that I ever received was not really through words, but rather through action. That my friends, is powerful!
I want to share a photo that was taken right before my local TV interview, with NBC ND News. It has become one of my favorites and a great memory of the day, I truly started my path to advocacy.
Trevor & Brenda

Thursday, September 29, 2016

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

RA Blog Week: Day #4 Today's writing prompt is; The pain of pain meds - Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? 

I actually touched on this very subject with a blog post in April of 2014. My storyteller, Trevor had this to share. I will post the highlights from that blog. It was titled: A Tale of Tragedy...

There has been much discussion on social media about the use of marijuana for medicinal
purposes. There has also been some heavy discussion on the use of narcotics. Here is the
thing folks, if you live with chronic pain, Brenda believes in the right and passage,
to be using these mediums. She would like to see legalization of marijuana in her state.
Some of you are gasping I am sure. She doesn't want it to get high, so don't be so quick
to judge, if you have not lived with chronic pain. She knows people who have seizures,
for which this has helped.

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

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

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

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

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

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

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

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


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. 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.

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.


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...