Hashtag #wearenotwaiting . . .

Saw this hashtag maybe a month ago and was elated. It was being used by patients like me.

I thought an empty bus stop would be a good visual for the “we’re not waiting” hashtag.

Although I did not see this as giving me permission to advocate at a new level, I certainly felt good to know I had company. And that I wasn’t the only one feeling a sense of urgency about changing things from the patient perspective.

I like how it’s directed somehow to society, to medicine . . . even as encouragement for fellow patients. Not as a threat or with anger necessarily. From my perspective this is a statement that only people who truly understand the stakes of living with illness can really understand.

Right now there are two things I am not waiting for . . . that I am hustling, through my humble means, to make happen.

  1. Myself and a fellow dialysis patient are organizing the help of a local politician (our MPP) to see if we can get aspects of the NxStage dialysis system brought to Canada sooner. Word is that these innovations – which will allow hemodialysis patients to travel freely – will get to Canada in an estimated 18 months to two years.
soft_case_for_brochure

NxStage in full travel mode!! The bags are the key to the system being portable.

#wearenotwaiting

  1. I am planning on traveling – a real trip. It will be the first time since I started Hemodialysis in 2012. There are options to travel with Hemodialysis but options that I am not comfortable with as a Home Hemodialysis patient. In the meantime, there is a family event in August in Orlando. And believe me I am fighting and doing the work so that I can go too. Even if it’s a very short visit . . . I am going.
100804103648_1_900x600

Getting on a plane . . . for the first time since 2011 WILL be exhilarating. :D Seeing family and friends? I have no words.

#wearenotwaiting

The tones of these missions I’m on are not angry. I think once life gives you certain challenges (like a health challenge) your belief that you’ve got all the time in the world dissipates. The tone is urgency.

Not being fatalistic or morbid . . . but I don’t believe I have all the time in the world. I am on Dialysis forums (through Facebook) where I see fellow dialysis patients pass away on a regular basis – every week. Some are so sudden – they post something earlier on in the day (in a normal way) and then later one of their loved ones (or a forum member) mentions that they’ve passed.

Seeing events like that does give life a sense of urgency.

Those of us with chronic illnesses (and illness in general) do not take time for granted.

I am not waiting 18 months to two years for the technology for my machine to enable me to travel. I don’t want to. And if my fellow dialysis colleague and I can help expedite the medical approval process in some way we will. At least we’ll try.

I am also going to do the work – huge hoops and bureaucracy – so that I can go to the family event on August 16th. Finding the right people to speak to, sorting out finances . . . on and on. My family meets for events on a regular basis – a few times a year. And I have missed every event since 2012. Christmases, parties, cruises, reunions. That trend has to end.

The hashtag sums it up. We are not waiting.

I hope this blog helps you to understand why patients are saying it. All of our reasons are different. Some of us may have more time and some less.

The common thread is knowing that our time is precious and we are going to figure out how to make something of it. (Everyone should be thinking this way ultimately).

I always commend the clinicians and medical executives that work 9 to 5 to help us. I thank you for your effort. It means the world to us . . . you are certainly important. Your effort is appreciated.

Us patients work with our health issues 24 hours a day. Of course the stakes are going to be a little higher for us.

Posted in The Bigger Picture, Progress, Musings, Message | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Opening a NEW CHAPTER . . .

In the past I’ve made videos for this blog but they were pretty rehearsed – not off-the-cuff.

Now I am trying something new . . . in preparation for a new blog/vlog that I am developing. Doing something more candid. More about my life and lifestyle. (Probably not for everyone’s tastes).

I’ll be covering fitness. Meditation. Yoga. Cooking. My love of fashion. My DIY projects around the house. My hobbies that keep me sane – horseback riding. Even trying new things. And eventually travel . . . if I can get that part of my health sorted. A lifestyle blog.

This blog/vlog will be about balance. How Kingston, ON is a staycation until I can travel. The things I do to keep life worth living despite my health and dialysis. It will be full of big videos and photos. I am really looking forward to working on this new venture.

Screen Shot 2015-06-28 at 9.29.21 PM

Trying out real vlogging.

Here is the link to the video (pictured above) where I talk about this new chapter: https://youtu.be/7EDvY6BTAlk

In the next few months, while I learn my new camera (GoPro 4 Silver) and practice vlogging – basically speaking to you through the camera – you will see videos from time to time where I just speak to you informally.

I will still maintain this blog and use it as I have been – to document my health progress, advocacy, my professional advancements and commentary on the medical system from my perspective.

I think this would be a great time to say thank you for reading my blog posts and supporting and encouraging me. These past few years with you have meant the world to me. Private notes and feedback from have been wonderful. All the love has been appreciated.

4759535950_3da0ea181e_o

If you’re enjoying what you’re reading (and seeing) please further support by subscribing to my blog. (There is a button above.) Thank you!

Consider subscribing to my YouTube channel too. Like videos and post comments, I’d love to hear from you. https://www.youtube.com/channel/UCaj9QfPGIMJ685Mnwm3BFoA

Also check out my Facebook page.  www.facebook.com/knswriter

And Twitter account. www.twitter.com/knswriter

Again . . . THANK YOU!!

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Open Letter to my Diseases . . .

Dear Kidney Disease, Heart Disease, Hypertension, Anemia and friends . . .

We’re cool, ultimately.

Not because I am happy to live with you all but because I had to make peace with you, since we met (in my teenage years), or else I would have gone crazy by now.

I am angry with you because you’ve limited some of the things I would have liked to do with my life. Things I would have liked to try.

I didn’t consider having kids because I was afraid of what being pregnant might do to me physically. I also considered what would happen if I died and my kids had to live without me – as I lived without my Mom after her bout with her disease. If you happen to see Lupus, respectfully tell it I say, “kiss my ass”.

For a long time I didn’t believe I was whole as a person because of you. I believed I was broken. You prevented me from pursuing some goals . . . perhaps even prevented me from pursuing real love in my life. Luckily I see myself as whole now.

You’ve put me through some physical pain. Some seriously painful stuff. I have a few memories that can still make me wince. I really hate you for that. Just being honest here.

You’ve also put me through some terrifying and traumatic moments. Procedures. Ambulance rides. Weird heart palpatations in the middle of the night. Vague death-related uneasy feelings. Terror. I didn’t appreciate that. Even now I have a stomach ache that is almost tear-worthy.

You’ve robbed me of time. Doing dialysis. Sitting in hospital waiting rooms. You’ve certainly robbed me of professional-earning time. My financial situation feels your impact. Thanks! *sarcasm*

Having said all that. (And I went that deep because I wanted to be honest).

In a weird way I am thankful for you.

*sigh*

You’ve taught me that I am pretty damn strong.

You’ve taught me that I am courageous.

You’ve taught me to be thankful for good times – when I am well. Even well-ish is good enough.

You’ve taught me to put your presence in perspective and see myself as being perfect in my way, despite all of these diseases. You don’t get to define who I am.

You’ve taught me to fight to have the best life even under difficult circumstances.

You’ve taught me to be as fearless as I can be.

You’ve taught me not to take time or energy for granted.

You’ve taught me how to reach out to people for support. That I can not manage you all on my own.

You’ve strengthened my relationship with God/universe.

You’ve taught me to be grounded in faith and to make time for my spiritual healing.

You’ve taught me to savour life more. And I work on that every day.

You’ve taught me to prioritize my physical healing . . . you’ve made me a “gym rat”.

You’ve taught me to laugh as much as I can. And to try not to take life too seriously.

I know I am a better person because I’ve had you.

You’ve given me life and purpose in the goal of sharing my experiences with you as a patient advocate. You’ve given me experiences to write about; to speak about; to advise about. An important part of myself to share . . . with the goal of helping other people who live with you too. And helping improve medicine by sharing my perspective of living with you all.

I would not wish you on my worst enemy but at the same time I am thankful for you.

I have learned to love you all for what you’ve taught me and brought out of me.

You have been part of my toughest and hardest learned lessons through time.

Thanks?? Yes, I guess it’s THANKS.

Love from your “frenemy”,

Karen Nicole

P.S. Please thank ePatient Dave, Dave deBronkart, for this letter. He inspired me to write you.  https://karennicolesmith.wordpress.com/2015/06/19/messages-from-a-powerful-interview-with-e-patient-dave/

Posted in Message, Musings, The Bigger Picture | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Messages from a Powerful Interview with e-Patient Dave . . .

Our attention span for watching videos has changed – it’s very low these days. So for me to suggest you watch a video over 30 minutes long . . . you know there has to be some real value here.

Screen Shot 2015-06-18 at 9.39.47 AM

Dave deBronkart, also known as e-Patient Dave. This interview is between Dave deBronkart for the Mayo Clinic’s “Healing Words” program for their in-patient TV channel, produced by Mayo’s Dolores Jean Lavins Center for Humanities in Medicine.

Here is a link to the actual interview: http://www.epatientdave.com/2015/04/30/mayos-healing-words-program-reading-from-facing-death-with-hope/ It is so worth the time.

Dave deBronkart is an international patient engagement advocate, speaker, author of Let Patients Help: A Patient Engagement Handbook, and a blogger. This short bio really does no justice to who and what Mr. deBronkart does. Here is a link to his “About” page on his website. http://www.epatientdave.com/about-dave/

I was moved to tears watching this interview. There were so many points that touched me as a person living with chronic illnesses.

Here are a few points that I came away with after watching the video.

  1. Managing negativing thinking when dealing with illness is very important. It frees one to be effective in order to do the things that are really important at that time.
  2. Laughing improves health. Laughter is a way to manage negative thinking while dealing with an illness. Laughter may have it’s own power to make us better that we do not yet fully understand with our current level of science.
  3. Doing as much (in life) as you did before you were diagnosed, with your illness, signals to your body not to start shutting down. If you do less (activity) your body will shut down taking your activity level as a sign that you’re dying.
  4. We set the tone with friends and family about how to treat us with our illness. They learn from us how to react.
  5. Going through illness (something very hard) alone is not nobel . . . we have to give of ourselves completely to be open enough to receive all that comes back to us. (WOW!!)
  6. Consider writing a letter to your disease . . . or diseases.

Closing quote . . .

“When you’re facing the question, ‘Is the universe done with me?’ . . . and people start coming out of the woodwork and cheering for you – and there still was not guarantee – but at least I had a sense that if I was going down, I was reconnecting with people.”

Here is a link to the book that encapsulates some of what he spoke about.

http://www.amazon.com/Facing-Death-patient-learned-faced/dp/1466302895

Here is a link to Mr. deBronkart’s other books. Including, Laugh, Sing and Eat like a Pig.

http://www.epatientdave.com/books/

Posted in Uncategorized, Amazing People, Message | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

What is PsychoNephrology? Interview with Kidney MD . . .

Had the opportunity to meet a kidney doctor, named Dr. Gavril Hercz. He is a staff nephrologist at Humber River Hospital. An Associate Professor at the University of Toronto. And a member of the Canadian Psychoanalytic Society.

He’s part of a new wave of kidney disease medicine that looks at more than just treating the physical disease. This new way of approaching kidney disease is called, psychonephrology.

I’m interested in this broader approach because I believe it will better address the overall concerns of patients living with chronic kidney disease. I believe if our concerns are better addressed then our lives will be better and our outcomes will be better too.

ACA Health Care Coordination

I chose this photo because it suggests dealing with illness from a wider perspective than just medical needs. With everyone at the table, a wider perspective will be addressed. A wider perspective will lead to better understanding of the person living with the illness and lead to a healthier and more happy patient.

I was able to ask Dr. Hercz a few questions about psychonephrology. His answers are a little long but worth the read.

The most important thing he said was . . .

“The hope is that further interest in psychonephrology will lead to widespread acceptance of the equal importance of caring and curing as applied to kidney health.”

1. What is psychonephrology?

Psychonephrology concerns itself with psychosocial topics and aims to create a common language, which would enhance communication between patients, families and clinicians.

Beyond communication, it fosters ongoing research in psychosocial areas, which would positively influence current and new ways of delivery medicine to patients.

Although this was an important topic during the early days of dialysis therapy, i.e. from the 1960s to the 1980s,  psychosocial caring approach was superseded by more technological and pharmacological concerns of nephrology therapy. Recently, however, there has been a growing interest on the emotional aspects of nephrology care, especially with the emerging focus on patient centered care.

Part of this is the realization that fostering more empathetic communication can result in improved adherence to therapy, less intercurrent illness and reduced staff burnout.

2. Why do you think this approach is important?

For patients coping with kidney disease, too often the focus is on issues concerning blood test results, blood pressure readings or machinery problems. Although these are vital for good health, there are other equally important topics, often unspoken, which have a huge impact on one’s coping abilities. We tend to  ignore powerful emotional disturbances, which may affect us, our families and our medical caregivers.

These changes cover a spectrum of emotional responses, such as anxiety, depression, sleep disturbances, inability to concentrate, inability to work with nephrology staff, inattentiveness to treatment procedures, etc. All these reactions are part of the normal response to dealing with a chronic illness. Unfortunately these reactions may be little understood by the staff or our families. The misunderstanding may make the situation worse, both for patients and the health care team.

3. What do you think this means for kidney patients? (Dr. Hercz chose an example to answer this question.)

We realized that the transition to dialysis can be a very anxiety provoking time for patients and families. As a result, we have devised a dialysis transition unit, with an increased emphasis on emotional support, self-management and education. This has resulted in greater numbers of patients adopting home dialysis modality as their chosen modality of treatment. We are currently exploring new forms of peer support to help with this process even more.

determinants_piechart250

This is just a graph that I found online but looking at the suggested percentages, Clinical Care accounts for a small percentage of the “bigger picture” when health is being considered.

Posted in Amazing People, Message, Progress, The Bigger Picture | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Open Letter to NxStage Tech Support Guy . . .

Wanted to share an experience I had with the NxStage technical support line. And what I would say to him if I knew who he were.

support-banner

That’s not the actual guy, btw. :)

Sometimes, because of my busy schedule, I am a little tired when I’m getting on the machine. And when I’m tired I make simple mistakes . . . as we all do.

Dear Technical Support Guy,

Last week when I called, tired and almost in tears (late on a Friday night), you were so patient and kind with me. When you noticed I was frustrated and nearly in tears your tone became even kinder and more patient.

Thanks for helping me right the situation so I could continue and finish my treatment. Thanks for suggesting we stay on the phone a little longer – so you could make sure my problem was fully corrected.

I appreciate you very much.

Best,

Karen Nicole

In all honesty, I’ve called the NxStage Technical Support line quite a few times. Every time I’ve spoken to someone kind and knowledgeable. I am amazed at how much these people know.

As a general statement, I must say, having this number to call makes a huge difference to my dialysis experience and to my peace of mind.

Knowing that I can call someone, no matter the time of day, gives me an extra level of assurance that I am supported. Support means a lot to me.

Posted in Amazing People, Musings, Progress, The Bigger Picture | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment