Political Power ? Strength in Numbers!

[Damaged]

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.

[Eiram50]

What a wonderful idea and I fully see the benefit of this fir people, especially those newly diagnosed.

I wish you luck in your endeavour .

Marie

[nomoreheels]

I'm not Canadian & I'm afraid it's off subject but do wonder why if The Arthritis Society estimates that 300,000 (about 1%) of the Canadian population have RD why is there such a discrepancy when in BC alone it's thought 650,000 have been diagnosed with it? Do you have any idea?

[Damaged in reply to nomoreheels]

No, I just read a newsletter from the Foundation re recent fundraising activities. This article mentioned the membership and I was blown away. I have been a Financial Planner for twenty years and yet was clueless until diagnosed. I cannot understand why such a devastating disease is almost kept secret.

Not true, the identity crisis referred to by doctor Franklin explains it very well. An Identity Crisis in RA. Arthritis is a symptom of autoimmune disease not the core of this illness. People and many GP's do not seem to differentiate from Osteoarthritis.

It seems a sad truth but so many young people affected these days it may not be an issue much longer. So sad and yet it may just be what leads us to a cure and not just "treatment".

There seems to be another 'great leap forward' in intellect. The era of super babies. A fantastic example is a 15yr old just tied all ancient monolithic sites to a mathematical formula which aligns perfectly to all Incan cities. In creating this map located another previously undiscovered city. It is amazing what youth have been creating. Who knows what the little geniuses will think up next!

[LyndaKenny]

I love your enthusiasm and think what you are suggesting is a great idea. I was only diagnosed in June so I'm seen as a newbie. Google became my friend and my enemy. Good luck with everything

[Hidden]

Actually, I think that is a wonderful idea - the buddy system. Sorry - I'm in the US not Canada, but I still think it is much less scary if you have someone you can throw things to or against...

[Damaged in reply to Hidden]

I think the system should be implemented in all countries. It can be done by patient groups not governments.

It does not need to violate privacy. The people willing to be a buddy provide contact information. These lists can be made available to all local Rheumatologists. The doctors can then provide a call list to newly diagnosed patient. That patient can then choose the buddy they feel comfortable with. For the volunteer, they can choose to accept new pt or not. If they are going through a difficult period they can pass.

Once this group is functioning a second group can be created to provide support to existing patients. It has been almost two years for me and the questions do not end. This site is a great support but sometimes you just need to talk not text.

With so many associations this should be relatively easy. Another shortfall is the beaurocratic nightmare that comes with any chronic illness. There are programs run by pharmaceutical co. But the goals are to make money. We need an objective venue to enable us to make objective decisions.

There should also be a resource centre. Why do none of the current programs have a list of services and service providers. I had to search out every detail. Tests, drugs, treatments, research etc I just need to do something besides sitting at home with no distractions.

[GranAmie]

I feel and admire your aims and mental energy so much. I am in Ulster but wd volunteer if i could. Best of luck! xx