Ever since Friday morning this incident has been on my mind...
It was my first day of my IV Solu-Medrol infusion. The nurse arrived at our house, set up my IV and then we had to fill out the required pounds of paperwork. Questions range from things about my current symptoms to where am I on the pain scale to what is my official diagnosis, who is my doctor, etc etc. But then came a question that I was never expecting to hear...and it was a good thing I was sitting down. My nurse asks me,
"In the event that your heart stops and/or you stop breathing, do you want me to perform CPR?"
Chris was in the living room where he overheard this, looked up and proceeded to turn green as he ran over stuttering,
I managed to blink a few times and quickly spat out,
"Um, yes. Of course! I want CPR. I would like to live please."
Chris' color came back, my nurse circled Yes, and onto the next question...
But I could not stop thinking about that question on that form.
Sure, I understand if the patient is dying from terminal cancer and there is very left for the doctors to do and they are in immense pain. I understand it for people with ALS (Lou Gehrig's disease) which is also fatal, painful and increasingly devastating. They fill out a DNR order.
It is not an uncommon thing for terminally ill people, right?
But Multiple Sclerosis is not considered a fatal disease. Incurable, sure, but not fatal. So why is this nurse basically asking me if I want to be considered DNR?
That night as I layed in bed desperately wanting to go to sleep, but writhing in so much pain I was sure every nerve in both legs was dying or lit on fire...I thought, you know, I am dealing with excruciating pain for hopefully only a few days/weeks, and then *hopefully* it will go back to occasional/bearable pain. But what if I was an MS patient with constant excruciating pain? What if I was an MS patient who has lost use of both arms and legs? How much pain and disability would it take for someone to want to be DNR? What about the people that are essentially alone in their fight and don't have the support system I have (or the incredible team of doctors, nurses helping me through this journey)?
It really got me to thinking about something I heard recently: the suicide rate is 7.5 times higher for people living with MS than for the general population. There are many studies about this, and doctors debate whether it is the devastating symptoms of MS that lead people down this path OR if the intense depression often cause by Interferon (the leading treatment for MS) is the culprit OR if the depression is a direct symptom of the MS, caused by dymelination in the brain. It is enough to make anyone dizzy just thinking about it.
Now listen up people: Don't worry- this is NOT a cry for help. I have NO plans to off myself in any way, shape or form. I have so many doctors constantly assessing me for even the least little sign of serious depression. Apparently with Interferon you can be fine one day, then BAM! depression kicks in violently and without reprieve. It is why alot of people cannot tolerate these drugs. Many neurologists recommend adding an anti-depressant as a preventative measure as soon as you start taking Interferon. And on the really bad days when your body is searing with pain and walking around your own house is a great effort, falling into a deep depression might seem like a logical, even comforting choice. But that's just not my style. ;-)
I am pretty strong-willed and I think it would take a whole hell of a lot for me to ever consider something like a DNR order. And when I feel my absolute worst, here is what I do:
- I call friends and family and ask for help, be it taking me to the movies, making dinner, bringing over ice cream or sending Hallmark cards. I let people in to care for me, so I don't feel so alone.
- I get fired up about my MS fundraising. I send emails and thank you notes to supporters and solicit more supporters and I get my team fired up about walking in their red shoes!
- I write on my blog, which has been invaluable as a place to let out my thoughts and feelings, to work through them all and find peace with this crazy disease and this crazy world.
DNR? Hell. No. I've got a LOT of living to do....