Thinking and talking about death

October 16, 2012

Wego Health is having a Tough Stuff Month, and they were kind enough to let me write a guest post.  If you’re curious about my musings on death, please visit my post on their site.  And if you’re not familiar with Wego Health already, please check them out.  They do really great work.  Also, as part of Tough Stuff Month, they’re having a Catharsis Carnival where you can write anonymously about a topic that is usually not talked about.  This is a great opportunity to share your thoughts or to just get something off your chest.

Impatience: wanting to just DO something

October 15, 2012

I’ve always been a very impatient person with certain things.  I have endless patience with children, and I love to teach adults some things.  With myself, though, I have very high standards and I get very impatient.  I feel that I should be doing more, or that I could be doing better.  My current impatience, though, is for something that’s completely out of my control at the moment: my future.

This is nothing new, but until now I’ve been writing and thinking about this as frustration.  It’s frustration too, of course, but that doesn’t negate the impatience aspect.  I was trying to better define some of my own emotions this evening when it hit me that I’ve never experienced impatience like this, and that’s why I didn’t define it as such.  I’ve never felt so little control over my future.

In the past, I worked towards new career goals, flirted with cuties in the hopes of finding someone great, moved to a new apartment when I wanted to try a new neighborhood.  I’m not suggesting these things are easy, but I could do them.  Now, I’m stuck.  I’m dealing with crappy agencies telling me that I’m not sick enough for benefits, but at the same time I’m not healthy enough to work.  I can’t earn any money, which is so incredibly limiting.  I will have to move soon, but it will be to a much smaller apartment, in a town that I don’t want to live in, and I can’t even do it until I hear back about the long term disability (ltd) insurance appeal (because if I lose, I’ll have to move in with my parents instead.)  I don’t feel healthy enough to date, so I don’t even try to meet anyone.  I feel stuck.

At the same time, while I’m stuck, I’m also dreaming.  Before I had to stop working last year, I started thinking about ways to earn side income.  It’s not easy, but people can earn money by creating and monetizing web sites, by writing and selling ebooks, and by designing web apps.  I did some consulting in an area where I have some expertise and made some plans to expand that.  I’m not suggesting that I’d earn a full-time salary from these things, but they could provide some extra cash.  The problem is, I don’t feel up to doing them right now, and even if I did, doing any sort of work could mess up the ltd appeal.  I’m forced to not work!  I know I can’t hold down a job with set hours, even a part time one, but I bet I could do something small.  Maybe I could write an ebook, just a little bit at a time.  I could do some consulting, maybe a few hours a month.  I can’t do much, but I could do something and that would feel so good!

I’ve focused on the frustration of not being able to do anything in the present, and that let me ignore the frustration of my uncertain future, but today it hit me.  I was doing some online reading about more alternative ways of earning an income (because I’m realizing that I never want to sit at a desk for 40 hours a week again, even when I can.)  I was thinking about all of the ways I could make these other careers work for me.  And then I remembered that I’m far away from being able to try any of them!  I know I might not try them all, and maybe none of them would work, but it would feel so good to just try!

Then I was reading about some personal finance methods.  The ideas were great, and I was so excited to try them…. until I remembered that I have no income with which to try anything.  Until I earn some money, and build up my savings, I can’t try anything financial.  Again, I’m stuck.  And again, I’m impatient.  I hate doing nothing…. I want to try something!

I’m glad that I’m researching all of these ideas.  This way, if/when I can one day go back to work, I’ll already have ideas for careers to try and ways to save my money.  I won’t have to waste time figuring all of this out.  Still, that’s little comfort right now.  Right now, I get excited about these ideas I can’t try, impatient to just test them out.  I just hope that one day, I get the chance.

Which treatment might have done it?

October 9, 2012

M scoffs at me when I refuse to try multiple treatments at once.  She thinks I’m just dragging my feet, trying to avoid being proactive.  The truth is, with other parts of my life that is totally true and she’s nail me.  But when it comes to medical treatments, she’s way off base – I just don’t want to have something work without knowing which treatment it is.  And if something goes wrong, I need to know which treatment it is then, too.

Today a relative asked me for the first time in a long time if my new diet is helping at all.  What could I say?  I explained that in some ways it’s definitely helping – the daily nausea is gone (woo hoo!)  On the other hand, my energy has also improved, and I’m certain that’s at least partly from one of the supplements I’m on.  But could it be from the diet too?

I’d broken my own rule and tried many things at once.  Unlike any time before, these multiple treatments were all recommended by my trusted naturopath, plus they were recommended in books I’d read and by people I’d met online.  Everyone said that this stuff was too important to wait, so it should be done simultaneously.  I believe they’re right, but that doesn’t lessen the mystery.

I’m continuing to spend a lot of time and effort following this new diet, because I’m sure that even if it’s not having an immediate effect, it will help in the long term.  As for the many, many supplements, I’ll continue those for now.  Something is working, and since I can’t be sure what it is, I don’t want to eliminate anything.  My naturopath’s plan is to remove me from all of them over time, and to even lessen the dietary restrictions, so I’m hopeful that one day it won’t matter at all what’s working.  Still, I’m curious: which treatment might be helping me?  And could one of them be slowing down my recovery?

How sick is sick enough for you?

October 7, 2012

When I was a kid and my symptoms first started, a lot of people said that it was all in my head.  Doctors, nurses, teachers, friends, and family all expressed doubts at one point or another.  My mother was the only one who never doubted me.  I heard it so much that even I started to wonder myself.

After 11 years of symptoms, it was a relief to finally have a blood test as proof.  “Look world, it’s not in my head, it’s a real thing!”

Now I’m fighting the same fight again.  Only this time, instead of saying the pain isn’t real, people are saying it isn’t bad enough.  I keep wondering, how sick is sick enough?  What’s the limit?  What’s the definition?  My boss clearly didn’t think I was too sick to work.  Or maybe that was just wishful thinking on her part.  The long term disability insurance folks have said that they don’t think I’m too sick to work.  I’ve been spending months preparing the materials, bit by bit, to prove otherwise.  Now, I just found out that the MassHealth folks (our state medicaid system) also don’t think I’m too sick to work.  Now I have to figure out how to prove otherwise to them, too.  Of course, I’m expecting to get denied by the SSDI folks, since almost everyone is denied on their first try.  I just applied, but I’m pretty sure I’ll have to work on an appeal.  I got dumped by a doctor who’s tired of dealing with my expensive tests and extensive paperwork, and who was unwilling to state for the record that I’m too sick to work (even though he said it off the record many times.)  He told me to have another doctor do it.

Being this sick is the worst thing in my life.  Being unable to work is demoralizing and scary.  So what’s happening?  Instead of focusing on the positive parts of my life and trying to work through this crap, I’m forced to focus on the worst parts of this crap and explain and define it over and over again for all of the doubters.  I’m forced to examine and then reexamine the most negative parts of my life and lay them bare for strangers to judge me.  And they certainly do judge me.

I’m not the first person to go through this and I won’t be the last.  But at this moment, I may be the most irritated.  I just want to yell at all of those idiots, “If you don’t think I’m sick enough, then just how sick do you think I need to be?  How sick is sick enough?  How sick would you have to be to not be able to do your job?  How sick would your kid/parent/sibling/best friend need to be to not be able to work?”  Not that I think it would do any good.  I’m just tired of being judged.

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