lost in a broken system

Yesterday(14th) was my 28th birthday... as I sit reflecting on the year of challenges and accomplishments, one of the biggest fears I tackled was having a small medical procedure to get my IVAD (implanted venous access device) put in. My little button in my chest just below my collar bone, that was suppose to change my life...

I have been thinking and considering what I can do, as a fairly normal and average person, how is my voice any different from the next person. Well, I am not extraordinary but here we go..

My name is Hannah, I am a twenty eight year old with a chronic illness and I have been lost in a broken system for years now. I want to be one more voice that talks a little louder in hopes for some change. I have had to utilize a patient advocacy group (open arms patient advocacy) when the pandemic brought in a unjust decision to stop unnecessary medical procedures and my treatments they felt were not important and were canceled for a month. These treatments keep me out the emergency room which did not need one extra person in there if they didn't have to be in there during the pandemic. I have had to fight to become my own advocate and learn the ins and outs of my conditions and the Alberta, Canada medical system. Having an illness that is not well known has added to the struggles of a system overwhelmed and lacking an updated approach. 8 weeks ago, I got an IVAD placed for my treatments as I have been losing IV access in my arms and it was advised medically to get an IVAD. I am now faced with a system that will not help me get the medical supplies I would require to no longer need to utilize hopsitals, hospital staff and being one extra number in a system that is bursting at the seams. Every week, I spend 3 hours at the hospital IV clinic, every week around sickness and illness and people who are discovering the importance of self advocacy in a world they know little about.

I am no one special, I am one of many people lost in our medical system with no idea on where to turn or who to talk to next and speaking with countless departments and sub-departments on the phone. Sure I am going to be just another person to share my experiences and start making some noise, but because I am mad that I have become someone who does not get disappointed anymore when the system lets me down. The best part, POTS used to be included in homecare coverage and now it is not.

So here is to my next adventure, feel free to comment your story and lets make some noise and shed some light together on everyday people faced with challenges we did not choose in a system that forgets about us.