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.

Why using assets to determine benefits eligibility sucks

October 28, 2012

Let’s take two identical people, Jane and Mary.  Jane and Mary each graduate from college and get good jobs in the same city.  Each earns $45,000 per year.

Jane goes on some trips, but tries not to spend too much.  She uses frequent flier miles to go to Europe.  She brings her lunch to work every day.  She lives in a nice apartment, but it’s nothing fancy, and it’s definitely not her ideal.  She buys decent clothes, but tries not to spend too much.  She manages to save $10,000 each year.  She puts most of her savings into a retirement account, and keeps some handy in a savings account, just in case she needs it.

Mary goes on a fancy vacation every year, spending as she pleases.  She eats out all the time and goes to fancy clubs with high cover charges.  She lived in a luxury apartment for a bit, but now owns a condo in a trendy neighborhood.  She goes to the expensive department stores to buy high-end clothes and shoes.  She keeps around $200 in her checking account.  She doesn’t have any savings, but she doesn’t mind.

Now, Jane and Mary each get sick and have to stop working.  They both apply for SSDI.  Then they need to apply for other services too, like SSI and food stamps.  Mary is able to apply for all of these but Jane is not eligible to even apply for SSI or food stamps.  Why?  Because Jane has savings!

You see, someone decided that to get a lot of federal and state services and aide, what matters is not only income, but also assets, but for some reason they do not count houses toward the asset limits.  So Mary can get extra services that she can use to pay her mortgage, but Jane does not get these services to help pay her rent.  Mary gets help buying food, but Jane does not get help buying food.  Jane did what she was “supposed” to do – she saved for the future.  Now, the government is telling her to spend down all of her hard-earned savings before she can get their help.  And if she needs the money later?  Too bad.  To get help now, Jane needs to spend the money that she could otherwise use in a few years for extra medical bills, food, or clothes.

Now, suppose Mary and Jane both get these extra benefits, after Jane spends all of her savings.  After a few years, Jane and Mary are ready to go back to work!  Yay!  Mary is back where she started (minus a few years of work experience.)  On the other hand, Jane is now behind.  In addition to the same lack of work experience, Jane has also spent her retirement and other savings, and now has to start over.

Guess who I am?  Yup, that’s right.  I keep discovering that there are all sorts of services I can’t get, or even apply for, because I have savings.  Since they don’t look at real estate in calculating assets, I could take all of my savings and buy a house and then I’d get those services…. but I don’t want a house!  Why should I have to spend down my hard-earned savings?  I have spent my entire life (well, almost – I started saving when I was 10) building this up, and I resent being told that I’d get more help now if I’d wasted that money on martinis, fancy cars, designer purses, and the newest electronic gadgets.  I understand that help should be reserved for only those who need it, but if a house isn’t counted towards assets, then I don’t think my retirement fund should be either.  If they want me to spend down the money in my checking account, that’s annoying but fair.  But my retirement account should be off limits!

Our system is broken in many ways, and I believe this is one of them.  After all, if I need to spend more than SSDI provides for new sneakers, an umbrella, unexpected medications, or some other “luxury,” then wouldn’t it be better if I could spend my own money on it?  It would sure be a better use of the cash than buying Hermes bags…. which I don’t even want.

Looking for the government-provided cheese

October 22, 2012

As I type this sentence I have been on hold for 1 hour 55 minutes.  No, that’s not an exaggeration or some sort of typing mistake.  I have actually been on hold for almost two hours.

I have spent a lot of time on the phone for health stuff over the last few months.  There have been a few minutes at a time with doctors.  There have been a few 20-30 minute calls with my lawyer.  Then there have been long wait times of 10, 20, 60+ minutes to deal with social security, medicaid, and long term disability insurance.  Getting help seems to involve hours and hours on the phone.

In hindsight, I sort of wish I’d kept track of the wait times.  I think it would be interesting to see.  When I tell healthy friends about what I go through, they’re shocked – and I have it easy!  I’m lucky enough to have the patience and skills to deal with this bullshit!  What about the people who don’t have that?

Although, my patience is wearing very, very thin…..

There’s this idea that there’s a ton of free government money just out there for the taking, and lots of immoral people are taking advantage of it.  I’ve heard that more times than I can count.  The reality is that there’s very little government support and even when you’re completely deserving and completely qualified, it’s almost impossible to get the support.

It’s a beautiful autumn day here in New England.  The sky is blue, the trees are yellow & orange & red, the sun is shining, and I’m still in my living room.  A friend and I were going to meet at her office for lunch and eat outside.  We cancelled that picnic because I was still on hold and didn’t want to hang up and miss out on my chance to get legal help to appeal my denial of state medicaid services.  Maybe I can take a short walk after I eventually get off the phone?  But there are more phone calls to make, more help to seek.

I’m thinking of a mouse in a maze looking for cheese, but I think that to make the comparison more accurate, we’d have to add a playful cat to the maze.  That sounds about right.  Because the government and private insurance companies are doing everything they can to avoid giving people the aid that they provide.  I’m just going to keep trying to dodge that cat.

And speaking of cheese, I haven’t even had lunch yet because of the long hold time!  Time to forage for food…..

How helping out helps me

October 17, 2012

Doing too much is a bad idea and brings on more fatigue, but doing too little is also a bad idea and brings on more lethargy.  It’s hard to strike a balance.  I’ve also noticed that I feel better on the days that I interact with people I like for at least an hour or two (but preferably longer.)  A trip to CVS where I chat with the pharmacist for a few minutes usually doesn’t help much, but lunch with a friend can brighten my whole day.  Staying at home makes me feel lousier than usual.  (Yes, I am going to use “lousier” as a word.  Do you have a problem with that?)

In an effort to get out of the house more, I’ve done some unofficial volunteering lately.  A friend works for a nonprofit whose mission I believe in.  I know many of the staff there and I love hanging out with them.  A few times now I’ve gone to their office in the late morning (since early-mid mornings are tough for me), worked for an hour or so, enjoyed a nice lunch with some of the staff, worked a couple more hours, then headed home.  And of course, some of that “work” time involved chatting with friends there, too.  I always feel good (tired, but still good) on those days, but today was even better than usual.

Interacting with people is one of the reasons why I feel good on the days I help out.  Another reason is that I feel useful.  One thing about not working and not being able to do much else is that I don’t feel like I’m doing anything to help other people most days.  This is hard for me.  I have always worked in nonprofits because I enjoy doing something productive to help other people.  In my spare time, I used to help out some more.  Now, spending my days researching treatments for myself, doing my exercises, and measuring medications might be helping me physically, but it’s really not helping me emotionally.  There’s also the mental issue – when I sit at home, I don’t get to use my brain too much.  Sure, I read, but that doesn’t usually involve stretching my intellect.  The volunteer work isn’t usually the most challenging work I’ve ever done, but at least it’s different from what I’m doing every other day, and that’s enough to help.

So what made today so much better?  Well, in addition to helping out with several office tasks, I also helped my friend create a new budget.  For many reasons, his financial situation is changing for the better, but he also needs to be saving for some new, previously unexpected areas of his life (wedding, house, etc.) so we worked on the numbers.  I love numbers.  Math is great because 2 + 2 = 4 EVERY FUCKING TIME!!!  How great is that!?!  I can always count on getting the same answer.  I wish my health (or anything else in life) was that consistent!  Anyway, that’s beside the point.  The point is, I love this stuff, so I was able to use my skills and knowledge to help someone directly.  We spent a while working on this.  We looked at his paychecks, his retirement plan options, his obligations, and considered it from all angles.  I created a spreadsheet with formulas that will automatically update when he changes anything (yes, I’m a spreadsheet geek and proud of it!)  I added a chart that automatically changes, so he can visually see his savings increase over time.  We came up with a plan for him to save significant amounts towards retirement and reviewed the tax implications of the different types of plans.  By the end, he had a useful, beautiful spreadsheet and a greater understanding of his present and of his future.

In return, I felt, for the first time in a while, a great sense of accomplishment.  I did something today.  This won’t help my long term plans or settle my nerves about the future, but today, right now, it makes me feel really good.  Life has been difficult and stressful, but today it felt a little bit easier.  Helping someone else really helped me.  It was a distraction, but also a reminder that I’m not useless (despite what society and government says), that I can do something to benefit others.  I can’t do it every day, but I’ll definitely do it as much as I can from now on.

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?

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