That…you know…*feeling*

November 17, 2012

I was tired, but it was more than tired.  It was exhaustion.  It was like someone sucked my energy out of my body with a vacuum.

My muscles were tired, but that’s not really the word.  They were worn out.  They were heavy.  It was an effort to pick up my phone.  It was tiring to type or pull up the blanket or roll over.

Something hurt.  I don’t know what hurt, or where specifically, or what kind of hurt.  I just knew that something hurt.

I was hungry, but I was too tired to get out of bed for food, so I just lay there.  I tried to get up, but I couldn’t manage to exert that much effort.

And while I lay there, I thought about how to describe what I was feeling.  My doctors would ask.  A good description might help with a new treatment.  The problem was, I just didn’t have the words.  I couldn’t pinpoint the feelings.  If the vocabulary existed, I didn’t have it.

This wasn’t the first time I lacked the words to describe how my body felt, and I know it won’t have been the last.  I just hope that somehow I can find a way to convey it all to the doctors one day.  And to the nay-sayers.

2 Comments | Educating, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Where’s the compassion, Mitt?

November 3, 2012

There are many issues I care about in the upcoming election.  I care about the economy, health, women’s rights, foreign policy, and so many other topics, but I will try to contain my opinions and focus on healthcare here.

Last night I was watching an interesting show that did a small biography of Barak Obama and of Mitt Romney.  It covered their childhoods, educations, marriages, entrances into politics, etc.  I was half watching while I played backgammon on my phone (so addicting!) and then something caught my complete attention: there was a clip of Ann Romney, Mitt’s wife, talking about how scared she was when she first got “sick.”  She talked about being so fatigued that she couldn’t get out of bed.  One of her sons talked about how difficult it was.  She was then diagnosed with multiple sclerosis.  Around this time, Mitt was thinking about heading out to Salt Lake City to take over the Olympics.  Apparently he offered not to do it, so they could stay home in Massachusetts near her doctors, but she insisted that he do it.

I was furious.  This man has vowed not only to repeal the Affordable Care Act if he is elected, but to make it his top priority.  I understand that he wants government to be smaller (though really, if everything is handed off to the states, then what’s the point of keeping the states united?) but has he thought at all about the individuals who are affected?

I want to talk to Mitt Romney and get him to really consider how different his life could have been.  What would have happened if they didn’t come from wealth?  What if they didn’t have many many millions in the bank?  What if Mitt had to quit his job to stay home and take care of his ill wife when she couldn’t get out of bed?  What if that meant they had no income?  What if they had no health insurance?  How would she have been diagnosed?  What if they had no savings, and had to rack up medical bills to pay for her testing?  What if they couldn’t afford treatments?  Instead of deciding whether or not to organize the Olympics, Mitt could have had to quit his job and drain their savings to take care of Ann, with no money to pay for treatments, no idea when he might be able to return to work, and certainly no therapeutic horseback riding for her.  That’s what could have, and likely would have, happened to Mitt and Ann if they had not had millions.  So what does he expect everyone else, everyone without a fortune in the bank, to do?  As far as I can tell, he hasn’t given it any thought.  I wish he’d prove me wrong.

So far, his answer is simple: it’s not his problem.  Sick people should get help from their states, but the federal government won’t force the states to help, so people might just be shit out of luck.

I am incredibly lucky.  I am lucky because I live in a state where I am eligible for medicaid.  I happen to live in the state where Mitt Romney implemented a requirement that everyone have health insurance.  I live in a state where I can get at least a part of the help that I need.  Too bad Mitt Romney doesn’t realize that people outside of Massachusetts need the same services just as much, and that this unequal system is not in any way good for the country.  If only he could understand how the rest of the country lives.

9 Comments | Educating, Frustration, Healthcare, Politics, Rants | Permalink
Posted by chronicrants

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

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