wink     ;)

thecrippleblog:

I like traveling.  It’s always nice to break out of your usual routine.  Whether its seeing new places or visiting old friends, a change of pace can do wonders for your mental health.  I recently went to visit my best friend for his dirty 30.  My home town basically looks exactly the same so it was refreshing and nostalgic.  I had a great time seeing everyone but of course I am very relieved to be home.  Traveling when you have the kind of disability that I have tends to take a lot out of me.  While the trip was good for my head it was really tough on my body.

I think people who don’t have to deal with a disability have a hard time understanding why those of us who do need a vacation from our vacations.  My life is easier to live when I’m at home with all my equipment tat allows me to take care of my physical needs.  From commodes to shower benches there are things I need that can’t go on vacation with me just to have a semi normal life.  I was gone for 8 days which was enough to screw up my insides so that I felt weak and sick by the time I made it back home.  I hadn’t taken a decent shower in those 8 days because I had no way to do so, nor did I have what I needed to void my bowels well enough to avoid getting a blockage.  Not to mention the place I stayed at had steps up to the bathroom so I couldn’t pee without some one helping get up there.  It was harder to dress, eat , pee, sleep, pretty much live while I was away from home.  And it always is.

I think this is why many people with disabilities stay home a lot.  It’s not because we don’t want to be out and about, it’s just harder for us to be out and about.  For example, how many able bodied people have to figure out how they can use a public bathroom?  I know I do, and sometimes I can’t, the bathroom is either too small or has no where for me to set stuff.  This is exhausting to do on a regular basis.  I get tired faster than most because I have only my arms to do my whole day with.  Anything that adds to this has to be worth the effort.

My best friend’s 30th birthday certainly was. But I need a couple days to recuperate.  Hopefully I’ll be back to normal soon.  Unfortunately life doesn’t like to wait. 

frageelay replied to your post: In a few hours, my wife starts work again. She…

Is there any way to get an aide through health insurance?

I’m in the process of applying for Social Security disability benefits. I’m only at stage 3 of what is universally acknowledged to be a long, tedious process.

Step 1: Apply

Step 2: Fill out tons of paperwork

Step 3: Wait. And then wait some more.

Step 4: Get rejected. (Standard Operating Procedure. Happens to everybody. Deters most applicants.)

Step 5: Appeal the rejection. Lots more paperwork. Mountains of it. (If you’re still trying at this point, you must really be desperate. Now we’ll actually consider your case.)

Step 6: Either get accepted (Yay!), or GOTO Step 4 (Ugh!)

In the event that I get SSDI benefits, I plan on using them to hire someone to help me/us out. I don’t know how long it’ll be before that can happen, but I know it won’t be soon. :/

In a few hours, my wife starts work again. She works for the school district, so she’s had summer vacation with us, and it has been terrific. I’ve been slowly but steadily getting worse since the beginning of 2011. By the end of the school year, I was well past the limits of what I could handle.

But then summer started, and my wife was around to help, and she picked up the slack. Yay! She really is all sorts of amazing.

But. She goes back to work in a few hours. (Our kids start school a week later.) She won’t be able to pick up the slack any more. And I’m doing worse now than I was when the summer started. I have no idea how to make this work.

I’m pretty scared. Like, terrified, really.