This post is for all Canadians, from BC. It has recently been brought to my attention that an astounding number of people have RD in BC , 650,000 to be exact! Wow !
There are some serious shortfalls in support services. When someone is diagnosed with a chronic illness it can be devastating. There is a minimal six to eight weeks wait for a 'Social Worker'. No offence meant to that profession but this is not what people need. I thank heavens I have been a Financial Planner for twenty years. Those skills enabled me to survive the financial impact of illness. (When diagnosed I was completely unable to walk and remained incapacitated for sixteen months.) I did not regain function in time to save either business. However, I was able to restructure everything , reducing monthly expenses by 1800 monthly and reducing interest expenses from 30% to 2.19%. More importantly I was able to ensure we kept our home and could manage even if I never return to work. The point simply is this. What I needed was a sponsor or buddy.
As many of you know the first year can be overwhelming. There is so much to learn about the drugs, your condition your future. So many questions, fear and frustration. What would have been helpful was a contact person. Not a nurse, doctor or therapist. A person who has had a similar experience. I wanted to talk to others, like all of you, who has been through it themselves. I strongly feel there is no way of appreciating how all encompassing it can be until it happens to you.
The other factor of significant import is we have 650,000 people in BC. Illness has no boundaries. It is the perfect equalizer. We have lawyers, doctors, nurses, therapists, financial planners within our own membership. I went from fourteen hour days to a dead stop. It seems there is a terrible waist of talent , education and experience just waiting for an opportunity to present itself. I am sure I am not alone in my frustration.
I almost prefer being unable to lift my head up. I am far too ill for a traditional job but can certainly manage a few tasks. So my goal is now to start a buddy system. Someone a patient can contact when diagnosed. This person would help answer any questions and just be a go to person. I know I like feeling useful.
I would love to hear everyone's opinion, good and bad.