Tuesday, October 9, 2012

Worms and Wheels

Maybe caterpillars not worms, but close enough.

A little over a week ago, I went to a festival that I used to love our Woollybear Festival.  It's this great all day festival with a two hour parade where yes we are actually celebrating a caterpillar.  If you have never experienced our Woollybear Festival, you are missing out and need to come to Vermilion, Ohio in 2013 for it.  I would tell you the date but you will have to wait for the Browns' schedule to come out.  These things work around each other.   We are a football town.

After that day however, I am back to realizing I truly am at the point of needing a rollator if I insist on doing trips like that...you know when I insist on doing things that are so far past the line I can push to that I can no longer see it.  So today I sit staring at rollators online and feeling much older than I truly. 

All of this is ridiculous, but it's the feeling that I fought with the seizures earlier this year.  Back at my RA diagnosis, I was told that I was so quickly progressing at that point I would be fully dependent on a wheelchair by 30.  I am pushing 34 and while I am grateful for the extra time, I am upset at the marking of coming closer to the moment.

It took me a long time to use a cane.  Half of it because when I should have when using one, I had a program manager who kept getting in my ear saying that it wouldn't be wise to move to that point.  Of course she didn't know I heard the comment made to her from someone higher in the company about how RA wasn't a real disease.

Part of my problem with the move is the fact that I was doing so well until I lost health insurance and until my current insurance kicked in.  I had no insurance for over a year.  Not because I didn't want health insurance, but because I couldn't get health insurance.    First, I have a pre-existing condition that most group plans don't want to cover because the medications cost them tens of thousands of dollars a year.  Second, if I could find plans that would cover me with 50 pages of exclusions for RA and anything they could think of connected to it was still several hundred a month.  For someone who had no employment because of her pre-existing condition.  For someone in a never ending line of appeals at the time with Social Security.  And the plans would basically cover the cold or the flu only if they weren't related to being made worse by my RA. 

Would having that year of coverage and those expensive medications have made a difference?  Probably.  But there wasn't anything to be done.  I exhausted as many avenues as I had to get them from groups and hospitals until I had none, so now I start over.  And I shop for rollators.

I am 33, I don't want to be using a cane, much less a rollator or wheelchair.   After this festival, however, I have discovered that I don't have much choice for much longer.

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