Advocating for anyone or anything is tough. I advocate at work, and I advocate at work. It's a tough business, people.
In the fall, hubby had to apply for CPP (disability pension), and though we didn't know all the ins and outs of it, and asking our worker from the local brain injury association, we applied. It was actually to see on if disability (from BC) could get some money back that they paid to Anker over the last year or so. But we also thought that he would get up to $500 a month (less $500 from disability, but we wouldn't have to claim it towards what I make). Sadly, he didn't get approved. We were kind of upset, but somehow, not surprised. That being said, I read it, and got mad. And then, I got madder. They said that Anker would be able to go back to work. Ummm...back to work doing what? (that being said, I hope that he will still back to getting is regular disability next month)
So, it looks like we will have to re-apply. On top of that, b/c of what I make, he only gets it for about 6 months, then we have to live off my income. I don't make a ton. I make okay money, but not great money. It has been SUPER tough to make ends meet sometimes. My family has helped a bit, but we really hesitate to ask them much, b/c we want to do it on our own. Advocating is tough. It is exhausting. It is painful. It is sad. It is frustrating. We have to re-do the paper work, set up appointments, go to the appointments...and I am the one doing (making) ALL of it. He rarely picks up the phone...I have do to all the spelling/writing/phoning. So, we will re-apply. Why? B/C we need to. For the sake of us. For the
sake of him. For the sake of others in his same (or similar) shoes. Even
though I/we can barely try again. We just do it.
Seriously, though, I don't know on how people do it, day in and day out. I am told that I am strong. That I am brave. That no one else could do what I do; have the life that I live...that is sweet, but it makes me realize that it really IS exhausting. With Anker having his liver disease on top his mental issues, as well as his Raynaud's, it is triple whammy. No one really has heard of PBC, nor have they heard of RP, so we have to explain both to them. Then, like I said, there are his mental issues...he has dyslexia (severe), frontal lobe injury, dysgraphia, as well as a host of other issues. I am just barely touching on the issues....I could go on and on. There are a host of other things that come under those three main issues...not to mention, his infertility.
So, all that being said...our life is very different than a "normal" marriage/life. Sometimes, I don't mind it...in fact, I kind of thrive on it...and other times, I find it darn-near exhausting.