The Battle

I'm pleased to announce that I've been keeping strict to my new routine. Extra physio and exercise is going well, and *knock on wood* I already think I feel better. This might even be the longest I've kept up an exercise routine. Granted, I'm only doing about 10 minutes (not even consecutively) on my exercise bike almost every night but its a start. I'll brag about this more when it's been a little longer. I still feel a bit silly sounding proud of it.

Yesterday, in all my good-feeling healthiness, I had to talk to my disability case-worker. I'm on disability through work, so that means I get two years of payment under the conditions that I "can no longer perform my specific job", and then I get reassessed because the terms will change such that I must not be able to perform ANY job in order to get paid. I'm just over a year into this. Apparently, my case-worker and I must discuss my health monthly or so for him to make reports on whether I'm improving, etc... Its friggin frustrating. I can't seem to wrap my head around the idea that they can't just use my test results (that are monthly) and look up CF on the internet and just "get it". I realize that the questioning is there so that other not-so-sick individuals don't abuse the system.. but its difficult to re-explain every month how many minutes I am able to walk for, how much weight I can lift, etc without losing my mind. I'm so anti-lying, and raised to be so strong, that when he says "do you think you are capable of sedentary work" I instantly say yes.

This time he told me that he would like to transfer my file to a lower maintenance type of program. I would no longer be required to talk to anyone on the phone regarding how I'm doing (he must sense my disdain for doing it with him) and would only need to fill in paperwork once a year. I would still need to be reassessed after the 2-year mark to see if I can work, but whatever... He then said this "I am ready to make the transfer, however, I have record of one particular conversation with us that you had where you said you think you would be able to work. This is preventing me from transferring you because the lesser maintenance program is really meant for people we don't anticipate to ever go back to work". I then said this "Before I start, the way I see it, is that anyone, even in a body cast lying in a bed is able to do sedentary work as long as they can speak or use a computer". He laughed and seemed to understand my frustration.

In the end he transferred me. The thing that stresses me out, probably comes down to the way this year has gone. I've lost so so many people I've known with CF. I'm actually glad that I finally had to experience this reality. It's made me look at everything differently, and its partly why I am fighting so hard these days. That said, the year I/we have had has made me worry more. I am happy to try and fight to keep my lungs as long as possible. I miss work alot, but I have seen such great changes in the stability of my health since I left. I don't want to change what is working for me. I don't want to risk my life because some insurance company deems me able to work. I'd rather suffer financially. That's just my two cents. Either way, I'm free of the interviews, and I feel great about that.