Limbo sucks

December 10, 2012

I hate being in limbo.  I’m not talking about the game with the broom handle.  I’m not talking about religious limbo.  I’m talking about being stuck in life, with no control over the outcome of a situation or of when the outcome will even arrive.

There are small kinds of limbo, where I’m just being indecisive.  Should I cancel my plans for tonight?  I hem and haw and Limbocan’t decide, and then I get this email from a friend:

“I saw on Twitter that you’re in rough shape. Do you want to cancel/reschedule tonight?”

She sent that today.  Totally awesome.  That’s someone who gets it.  But I digress.

Right now I’m talking about the big kinds of limbo.  I like to plan.  We never know what will happen in life, but we can figure out different ways to handle possible situations, right?  So if I quit my job and it takes too long to get a new one, I can do temp work, or do consulting, or get a lower-paying job to handle it.  That was a situation I planned for several years ago.  I didn’t entirely have control over when I’d get the “right” job, but I had control over my responses to the situation.  Besides, I wasn’t totally without control – I knew that I could always take a lower-paying job if I needed to.  That was reassuring.

My current limbo is much more sucky.  I’m waiting for a decision on this damn insurance appeal, and until then I can’t do anything.  I can only make basic plans: if I lose, I’ll move in with my parents and if I win I’ll look for a cheaper place to live.  But I can’t apartment hunt yet.  I can’t start packing.  I don’t know if I’ll be able to afford to finish out my current lease.  I don’t know if I can afford to buy clothes or to go out with friends.  I don’t think my health is good enough to do part-time work or take a class yet, but even if it were, I’d worry about that messing up the appeal.  I can’t plan for a future career, because I have no idea when or if I’ll ever be able to work again.

Six months from now I’ll probably be living someplace else, but I can’t plan for it.  My health could be very different, but I can’t plan for it.  My financial situation will have been determined for the immediate future, but I can’t plan for it.

I’m stuck.  I’m sitting in limbo waiting for some unknown stranger to decide the direction my life will take.  And it sucks.

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

A new low: suppositories

December 5, 2012

About a month ago I wrote about some of the varied “gross” aspects of my health issues.  These have set a whole new standard of “grossness” for me.  I don’t think twice about some things that would make other people really cringe.  And yet, this week’s prescription of suppositories really got to me.

I have had gastrointestinal problems for many, many years.  I’m not even sure when it all started, but I’d say it’s been around 18Suppositories years now.  That’s 18 years of pain, cramps, diarrhea, constipation, gas, heartburn, and nausea.  Oh, and fear.  Definitely don’t forget the fear.  There were so many nights I lay on the bathroom floor, doubled up in agony, wishing the pain to go away.  There were times I hoped I’d die.  I have spent countless hours dealing with this stuff over the years.  At times, it has felt tortuous.  Sometimes, it was worse than any of the other pain I had throughout my body.

So that’s some basic background on why GI stuff is a sensitive area for me.  I guess a lot of people would have emotional issues after 18 years of that.  Thanks for getting through that.  As a reward, here’s a more fun example of my emotional response.

I love sex.  I miss sex, but that’s a subject for another day.  Today’s point is that I love sex.  While I’m not ultra kinky, I’m definitely somewhat kinky, and I’m open to trying a lot of new things.  I’ve been tied up, spanked, and part of a threesome.  I’ve tried a lot of different positions.  I’ve had sex in public places.  I’ve taught my partners to be more kinky.  I’ve taught my partners new positions and techniques.  I’ve worn a collar, used toys, and made all sorts of sounds.  It’s not like I’ve tried everything, but I’m open-minded.  I only have three rules: (1) I’ll only have sex with consenting adults (2) I’ll only have sex with people I trust (3) I won’t let anyone do anything ass-related.  Yeah, that last one is a bit of a surprise, right?

So if I won’t let anyone put anything up my ass for sexual pleasure, do I really want to do it with a medication?  I mean sure, the affects of the med should last longer than an orgasm.  And maybe the med will help me get healthy, which will get me to the point of dating again, which means I’d start having sex again, which would be fantastic.  But that’s a lot of “ifs” and really, she wants me to stick medication up my ass!

After 18 years of pain and everything else, I just can’t stand the idea of using that out-hole as an in-hole.  I can’t do it.  I have rearranged my life for my health.  I left my job.  I started an intense diet.  I stopped dating.  I limit social time with friends.  I limit time with family.  I take a huge assortment of medications, supplements, and homeopathic remedies.  But I can not, I will not, stick anything up my ass.

I finally told my doc of my emotional discomfort with this so she gave me an alternative: it can be inserted vaginally.  Bingo!

4 Comments | Decisions, Expectations, Frustration, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

So happy I could cry: I finally have great-seeming health insurance

November 9, 2012

I’ve long since given up on going out on a Friday night.  If there’s a special event, like a friend’s birthday, then I’ll make the effort when I can, but otherwise, I just stay in.  I hope that changes one day, but for now, paying bills is the same to me on  Friday as on a Wednesday.

So I was going through my bills and other paperwork tonight, and I came across my new health insurance handbook.  It arrived in the mail earlier this week and I hadn’t gotten to it.  Unlike most people, I actually read these things.  Plus, I went to my PCP’s office today to show them my new insurance card and arrange a referral for my rheumatologist and they said I didn’t need a referral, so I wanted to make sure for myself.

I started flipping through the handbook, figuring I’d do a thorough reading later, but then it really caught my attention.  You see, I’ve always had employer-provided HMO plans.  With these plans, PCPs (primary care physicians) must give referrals for all specialists, and I pay premiums and co-pays for everything.  I’ve been lucky to have plans that didn’t have deductibles or co-insurance.  It was a very restrictive system, but it was the only one I knew.

That’s why I was shocked to find out about my new plan!  Now, I haven’t used any of these services yet, so I can’t be sure if they’ll work out the way they’re supposed to.  And I don’t know how long I’ll have this plan.  For one thing, I appealed my denial of medicaid, so I could end up with that instead of this.  And of course that doesn’t compare to the uncertainty of the long term disability insurance mess.  If I get the insurance coverage when we appeal, then I’ll get my old health insurance back.  I’d rather keep this new insurance, I think, but I definitely need to win that appeal so that I have an income.

I was accepted for this new plan despite my pre-existing health problems because Massachusetts rocks, and it was given to me without having to pay premiums because I have no income and Massachusetts rocks some more.  Believe me, I know how lucky I am!  But I was still shocked to read the details of this plan.  I can see specialists WITHOUT A REFERRAL!!!!  I feel like I’m dreaming.  This means that I don’t have to worry about whether or not my PCP agrees with my decision to see a certain doctor!  My big issue now is that I need to find a new endocrinologist, since my last one dumped me for being the cause of too much paperwork and too many expensive tests.  I’ve been worried about finding someone who practices what I think is best approach based on the research I’ve done.  Then, once I find them, my PCP would have to approve…. but not anymore!  I figure if I can see someone soon, then even when/if I get my old insurance back, my PCP would be more likely to go along with it because I’d already have seen the new doc (or she’d be pissed, in which case I’d find a new PCP.)

Even more amazing, there are no co-pays for visits, and the co-pays for meds are incredibly low.  Now again, this is a plan for people who have no income, so I know this isn’t what everyone gets.  Still, it’s amazing to me that they did it right!  They are offering free coverage to people who can’t afford to pay, so that we don’t get really sick and end up costing even more money to them later.

It’s amazing, almost unheard of, but I think I’ve finally encountered a health-related, government-related system that isn’t broken!  I sure hope it turns out to be as good as it seems, because right now, it seems too good to be true.

I’m sure all of you readers in other countries are wondering what all the fuss is about.  I just can’t even tell you.  Click on the “Healthcare” category in the sidebar on the right (you might have to scroll up or down) and you’ll start to understand just a little bit.  It’s really lousy here in the U.S when it comes to health insurance.  Most of it is linked to employers, and many people choose jobs based less on their passions, the work, or the job potential than on the health insurance that’s provided.  I really hope this ray of sunshine lasts for me, and that the new Affordable Care Act helps things!

6 Comments | Educating, Expectations, Healthcare, Medication, Politics, Raves, Support, Unpredictable | Permalink
Posted by chronicrants

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