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