Good news: I was denied SSDI

November 1, 2012

You’re probably wondering about that title.  Shouldn’t I be upset that I was denied SSDI?  I should be, but I’m not.

I’ll admit, I teeny tiny part of me was hoping that I’d be approved for SSDI on the first application, and that teeny tiny part of me is a little bit disappointed.  It would have made things immeasurably easier, no doubt about it.  But I also know that a ton of people get denied the first time around.  I read the denial rate was 80%.  I don’t know if that’s accurate, but more than 80% of the people I know have been denied the first time they applied, so I was assuming I would be too.  What I didn’t expect at all was that it would happen so quickly!  I applied for SSDI less than 2 months ago.  At the time, the web confirmation told me to expect a response within 4 months, but I assumed that was wrong.  I figured I wouldn’t hear anything for at least 6 months, maybe even a year.  And I heard today!

So I’m saying this is good news, because now I get to appeal the decision this month, instead of having to wait until next spring.  As soon as I speak with my lawyer I can start the next stage of this annoying, irritating, frustrating, exasperating process.  The sooner I get approved, the easier my life will be.  I am fortunate to be in a position where I can manage not having any income in the short term, but I’m not exactly wealthy, and not having an income in the long term could be a real problem.  I don’t want to cringe tomorrow when I buy the large 24-pack of toilet paper, but I know I will.  I don’t want to wear pants that are 2 sizes too big because I can’t justify even thrift store spending, but I do.  I don’t want to depend on others to support me, but without SSDI I will have to.  SSDI may not pay much (actually, it would be $3 more than my current rent each month!) but it’s still far better than nothing!

So starting tomorrow (or whenever my lawyer gets back to me) I can be proactive and work on appealing this damn thing!  I’ll let you know what happens….

4 Comments | Expectations, Healthcare, Politics, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

When “gross” takes on a whole new meaning

October 29, 2012

***Warning to those who know me in real life and to those who are grossed out easily: read this at your own risk!***

I did the saliva ASI test earlier this year.  Basically, you spit saliva into tubes and it gets tested for various things.  When I told people about this, they thought it was gross.  Really?  I guess my definition of “gross” has really been altered by all this health crap (so to speak.)

Last weekend a friend mentioned that her kid has a lot of wax in his ears and she’s always having to clean it out (he’s still a toddler.)  I commiserated, as someone with the same problem.  When I started to mention an example, she thought it was gross.  It turns out her kid’s earwax problem isn’t nearly as bad as mine, and apparently mine crosses the line into “gross” territory.  It’s not like I love cleaning the earwax off of my mp3 earbuds, but it’s just what I have to do.  It’s nothing, really.

Thanks to joint stiffness and limited range of movement, it is now hard to literally wipe my own ass.  Some days are worse than others.  Combine that with severe IBS (which is thankfully in remission!) and you can imagine the mess.  Yes, there have been times when I accidentally got some of my own shit on a finger or something.  I won’t pretend like I was thrilled with it, but what can you do?  I just used extra soap when washing my hands and moved on.  There was no point in dwelling on it.

As a child, I got frequent nosebleeds.  This is common in my family.  There were several times I woke up during the night to find a bloody nose and a bloody pillowcase.  At 3am I’d be washing out the blood.  So what?

Thanks to what I now know is PCOS, I never had a regular period.  I’d bleed for 3 weeks straight, then nothing for a week, then it would come back for 4 days, then nothing for several months, then 2 more weeks of bleeding, etc.  Since it wasn’t predictable, my period obviously caused some messes.  Again, more washing of blood, this time washing it out of my underwear.  Again, I just didn’t care.

Three times now I have crapped on a guy during sex.  The first time it was a small amount and I assumed I was sick or something.  The second time, years later and with a different guy, was not so small and was incredibly embarrassing.  He handled it fairly well.  I told my gastro about it and it helped her figure out one of my problems.  She had me take a supplement which made me feel much better overall.  Unfortunately, after that I kept getting nervous that it would happen again.  It’s hard to have an orgasm when you’re constantly worried about shitting yourself.  I eventually got over it and moved on.  Then, years later with a different guy, it happened again.  He couldn’t have been better about the whole thing.  Of course, I got nervous again about another recurrence, but it hasn’t happened since.  Then again, I also haven’t had much sex since (due to a lack of partners, not because I’m nervous about this.)  I don’t know, maybe it will some day.  I sure hope not!

These are just a few examples.  I can think of others, and I’m sure you have plenty of your own.  Feel free to share in the comments below.  Sometimes chronic illnesses are gross.  I’ve seen and heard about much worse than anything I’ve written here.

So spitting saliva into a tube?  Really not gross at all.

In case you’re wondering about the picture of the ducks, I figure that was a lot better than any picture that would have directly related to what I’m talking about today.  I’m guessing you don’t disagree.

Leave a Comment » | Educating, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

4 Comments | Expectations, Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

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?

2 Comments | Decisions, Expectations, Frustration, Insensitive, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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