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...

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.

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