That's terrible Capt Al! My rant is really minor in comparison, my wife is always worried if I put on weight too. I imagine she pictures the difficulty lugging around my swollen, obese frame once I can't move. Actually I'm only a little heavy, my BMI is 25-26, just barely in the "overweight" range. I had been putting on weight but it's leveled off. They say it's better to have a little extra weight and not lose it. When the nutritionist recommended I put butter on everything at my last clinic appointment I could sense my wife's shock. Butter has been on the evil list for so long, it's hard for her to adjust. I figure I probably only have a year or so of eating left, maybe less, so I want to enjoy it while I can.
I know everybody says, oh, it's no problem, you can just chew your food and spit it out, but that's another rant. It's not easy to adjust to what we are going to be dealing with down the line. It's been 5 months for me since diagnosis. It is what it is, I just have to deal. But it's still hard knowing what is head, reading here how cheerfully people handle all these horrible sounding things. It doesn't help that I am kind of squeamish and uncomfortable with all these bodily functions.
Well what else, since I am on a roll. I only recently realized that power chairs cost 20 or 30 thousand dollars! And my Blue Cross has a maximum 5 thousand per year for DME (durable medical equipment). That means the insurance is going to be useless for this. How can they cost that much? I guess Medicare would pay more, but I am still working, for 2 reasons. First I am not disabled enough to not be able to work, since I do software. Even once I need a wheelchair I would still be able to work. So unless my hands go before my legs, I will need a chair before I am on Medicare. And 2nd, my wife needs insurance, and she is too young for Medicare. So we are planning to do Cobra once I stop working, and that is only good for 3 years (plus it's $1000 a month). I don't know what we will do for her after that, we are hoping Obamacare will work for her. But I want to postpone quitting as long as possible to get that benefit.
Now I can't complain too too much on this, because even though our health insurance is not great, I do have long term disability insurance through work that looks really good if everything is like they say. That will help a lot with expenses. But still it feels overwhelming wondering how we will deal with everything. Then once I do get a power chair, how do we transport it. That is another huge expense that we won't get any help with. At this point the plan is to look for used items. We all know how often those come on the market unfortunately. Even if you buy equipment, with ALS you are more borrowing it. Lots of hand me downs in the community.
Enough rantage, thanks for the opportunity!
