It's hard not to get angry and frustrated with our system. I know we have things that work but there are so many things that aren't working. Most of you hear about the symptoms and the every day challenges. I've briefly talked about the difficulty with medication coverage etc. but what you don't see is all the other paperwork and phone calls involved.
I feel like I could write a novel, but I'm sure if I did no one would read it so I'll summarize and hope that you all have the patience to read this.
In the past few weeks I have had a couple of phone calls regarding government paperwork. I sent this stuff in January to the government. CPP was a requirement from my insurance provider right now and along with that comes LTD tax credit. I don't receive anything from CPP but my insurance provider would be compensated. They kind of go hand in hand. So I received a letter from my doctor saying that LTD had required more information. Okay so now I had to mail this again in May. 4 months from when I sent it in. Next I received a phone call from CPP wanting to have updated information on my condition. I had to tell them that there was nothing to update. All of the information I gave them in January was the same and if they had processed it back then and not finally gotten to it in May, that it would have been updated information. Needless to say I lost that battle and had to drive to Winnipeg to see my doctor, who is no longer my doctor, because he moved, but was the only one with enough information about the situation to fill out the information they needed.
Now if that isn't complicated enough please remember that in between phone calls I have to wait for a letter with the requested information and then make the appointment and drive there etc. So I see my doctor finally and he requests for more reports from the neurologist so that they are on the same page and don't contradict each other. I get that. That's good, however, it is something that on a normal basis I would have to then contact the clinic here for those reports and they would charge his new office. But luckily I have seen enough bureaucratic problems and photocopied EVERY report they gave me when we first started this process. So I had the report and faxed it to him!
Who's still with me? You think you're lost? Try keeping up with all of this from my end!? LOL It's very very time consuming and complicated and stressful. Now here comes the good stuff. I was denied all of it! Why? Because I have to not be able to do ANY job. I can appeal of course but I now realize why most people don't...because of how much time and effort it takes. When a person already isn't feeling well the last thing they want to do is fight some more.
I did have a nice long conversation with the lady from CPP and in the end I asked what job would allow me to take random days off and work for one month then be off for 3 then work a month and take another 3 off. She told me that they have to wait for my medication to "kick in" because I may not have relapses that often once it starts working. I then asked about all of the issues I have when I am not in a relapse and how I could possibly hold down a job when I have these issues (which I won't go into detail) but she agreed and said that I could still do A job. Keep in mind that this job does not have to be full time, can pay minimum wage, can be in a location far away from here, but if I can do it I don't qualify. I asked what job she thought I could do. Her answer was I could work from home and be a telemarketer and if I was to be in a mall where bathrooms were near I could sit at a lottery kiosk....
So there you have it...unless you are bed ridden and unable to talk don't count on getting anything from our medical system. I could go on welfare though and make more than I do now.