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Living with a chronic disability and financial challenges

by Sandra L Campbell,

As so many know in their own lives and families, in a split second, life can change..... For me, a bad fall in August 2010 caused non stop back and leg pain and worry to find out what was wrong. Never ending paperwork and forms, specialists, imaging and long wait lists added to the frustrations. Finally a diagnosis, my lower spine was badly damaged. Then more waiting, tests, fear and uncertainty, permanent nerve damage, pain and mobility issues. How will I work, manage at home and pay bills? Fast forward to April 2014... my surgery did not go as planned and now part of my spine is gone and being held together with bars and screws. Everything becomes complicated by severe allergies to pain meds, XS Tylenol is all I can take to help manage the pain. I kept telling myself, I can do this, I'm tough and stubborn, keep trying, keep fighting..... Mike and my family never left my side, never gave up on me.... Here is my digital story on the AHS website called Sandra's Story: https://youtu.be/Pq2DlVdGvkA

Recovery was not easy, the pain persisted, I could walk, this was good, but change was needed. I decided to move closer to family in Lethbridge to have a bit more support for me and to try to help our aging Parents. A new beginning and job, a house to renovate for me and my Parents to make sure they were safe and happy. We migrated South in the summer of 2015 and our lives moved forward. By chance, we attended an AHS focus group on Chronic Pain that Fall and I became a Patient and Family Advisor volunteer soon after to help build a Chronic Pain Management program for the South Zone. This was just the first of many projects I am working on with AHS.

I was left with challenges after my back surgery, permanent nerve damage and toe drop in both legs, so I had to be careful. Unfortunately in June 2016, I caught my toes on stairs, tripped forward and landed on my hand.....lots of pain, more doctors, tests, forms and waiting, not good news, torn tendon and damage to my right wrist. Surgery was scheduled for April 2017, however, things did not turn out well, 3 months later I was diagnosed with Type 1 Complex Regional Pain Syndrome (CRPS), brutal relentless spreading nerve pain, hypersensitivity, partially paralyzed right hand and arm with lack of mobility. Lots of research to try to understand and sort out what I am going to do, can't work, so many ongoing fears and the stigma of medical leave and loosing my job. I can't sleep, so much worry and stress, how am I going to pay my mortgage and bills and look after my Parents. This is so tiring, frustrating and anger sets in, how am I going to manage all this, my financial situation became extremely overwhelming. I still have little to no use of my right hand and arm today with the CRPS spreading throughout my body, things are not good.

With family and my best friend, Mike's unwavering support, a dedicated and caring doctor and her team as well as the wonderful team at the Calgary Pain Clinic, we keep trying many options in hopes these will help. I give my heartfelt thanks and gratitude to everyone every day, but please don't give up on us, help us find other solutions. For those living with chronic pain and CRPS, this invisible, life altering challenge, don't give up, keep fighting and I will do all I can to help.

Life does go on and we look for all options to make ends meet financially, medical support like physio and so many other treatments cost money and if we have to travel to get that help, that too is a cost born by the patient and family. I am now in the middle of even more stress and challenges. There will be many people that can relate to what I have been experiencing no matter where they live, medical disabilities as we all know so well, are incredibly overwhelming in every way and financially destructive to the patient and everyone within the family unit, friends and care givers. I am about to be terminated from my job as I have not been able to return to work, I'm battling with insurance carriers that are making everything very difficult and I have my elderly parents living with me so that I and my family can help take care of them. I may even loose my home that we all live in due to all of this.

For patients and their families dealing with challenging medical issues, the financial aspects typically have been overlooked and not considered as part of the patient's well being. I am honoured and so encouraged to be working together with the Alberta Medical Association in partnership with AHS on this project to help support a change process that will include the whole person inclusive of the financial pains we experience in addition to the medical issues. Our teams working on this project are making positive strides forward in the trial group areas. This is not an easy subject, we are proud and talking about or admitting we have financial challenges is extremely difficult, but with so many dedicated people working on this program and moving it forward in our communities, I know we can make a difference and help Albertans!

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