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 great doc, but you didn’t hear it from me”

December 6, 2012

Our medical system is seriously fucked up.  I’m sure this isn’t news to you (and if it is, you can start learning about it here and here.)  Now, I know that some parts of it work well.  I used my new health insurance for the first time today, and that was great.  But in so many other ways, it just doesn’t make any sense at all.

What do you think is the point of healthcare?  Personally, I think it is to maintain good health, and to achieve improved health when needed.  Unfortunately, healthcare here is a business, so to the people in control, it’s about making money.

I saw my rheumatologist today, and of course at one point we talked about how I need a new endocrinologist since my old one dumped me.  He didn’t like that I require so many expensive tests, so much effort, and so much insurance-related paperwork.  I asked my rheumatologist for her advice.  She confided in me that there were a few in her hospital system that I should stay away from, and she asked me not to tell anyone that she’d said that.  Ok, I get that.  She shouldn’t bad-mouth colleagues.  No problem.  I would never say a word.  No one should bad-mouth a colleague – it’s bad etiquette – but when it’s a matter of someone’s health, it’s worth it.  All good, right?

But then she considered things, and finally told me about a center at another hospital that specializes in thyroid work, which is what I need.  She said multiple times “but you didn’t hear it from me,” and I assured her that I would never let on.  If I thought that writing this would in any way haunt her, I’d never write a word of it.  The last thing I want is to hurt someone who has fought on my behalf many times, helped me immensely, and gone above and beyond.

So here’s why I’m upset: why should a doctor get in trouble for telling a patient about a treatment center that could help them?!?  Think about that.  She would get in trouble because she suggested that I go to a different hospital.  She is not telling me that her hospital sucks.  She is not telling me to leave her practice.  She is not treating me badly. On the contrary, her primary concern is my health, and for that reason she is suggesting that I see the practitioners who are most likely to help me improve my health.  Once again, her focus is on my health!

And that’s why our system is completely fucked up.  Because a doctor can get in trouble for helping a patient improve their health, if it means sending the patient (and therefore the patient’s money) to another center.  Wrong wrong wrong.

So while we’re at it, PLEASE let me know if you can recommend a good endocrinologist in the Boston area.  I will consider my rheumatologist’s suggestion, but I don’t know yet if that place will offer what I need, or if they’re taking new patients.  Please send any and all suggestions.  I need someone who does thyroid work, especially Hashimoto’s.  Thanks!

Leave a Comment » | Educating, Frustration, Healthcare, Kindness, Limitations, Rants, Thoughtfulness | 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

How would you spend lotto winnings?

December 3, 2012

This has been a tough week, so instead of writing about trying to avoid germs while visiting a sick relative in the hospital, I want to focus on something ridiculous: winning the lottery.

If you were in one of the Powerball-participating states last week, or even if you weren’t, you probably heard about the record lottery jackpot.  I believe it was around $579,000,000.  That’s a whole lot of zeros.

The odds of winning the jackpot are extremely slim, but many thousands of people still took their chances.  Of course, their chances were miniscule, but still larger than mine since I didn’t buy a ticket.  With or without a ticket, I think this huge jackpot being constantly talked about made us all wonder what we would do if we won that kind of money.  I did, at least.  I couldn’t help it.  Thoughts of bit lotto spending kept creeping to mind.

Over a year ago I wrote about what I would do with more money.  I just reread that post, and found it interesting how some of my goals are the same but some have changed.  A big goal then was to work less than full time.  Of course, that was before I knew that my disability leave would be long-term.  Now, I just want to not have to stress about a lack of income.  I also mentioned what I was spending at the time: under $30,000 per year.  Now, I spend a lot less, even though I spend significantly more on medical expenses.  These days, I hesitate to spend any unnecessary money at all as I watch the numbers in my bank account getting lower and lower.  I’m putting off buying new winter socks, for crying out loud!  Of course, with $579M I suppose I could afford all the new socks I wanted.  Still, I would want to have enough to live comfortably, and then I would be so happy to give the rest away.

The big difference in my thinking between the last post and this one is how I would give away the money.  With a lot of free time, and the inability to be very active, I have been doing more reading than ever.  Among other things, I have become more aware of many of the problems in the world, and also more aware of the various attempts at solutions.  I want desperately to fix so many of these problems and I wouldn’t know where to begin, even with seemingly limitless money.  I suppose the key would be to find experts in each area and get their viewpoints.  How amazing would it be to fund disease research, help end human trafficking, and promote programs to get young girls involved in math and science?  That sounds like a fantastic way to spend each and every day.  It would be a dream come true.

*Sigh* I don’t expect to ever have a nine-figure sum in my bank account, and that’s ok.  I honestly don’t want to have that much money anyway.  But it would be so nice to one day be able to earn enough money to pay for all of my basics needs and some wants, and to be able to earn it by working at some fabulous nonprofit that’s helping the world.  I’ve done that before, and I miss it.  I hope so much that that happens again one day…..

In the meantime, I’ll try to save up for some new, warm socks.

Leave a Comment » | Expectations, Limitations, Rants, Raves | Permalink
Posted by chronicrants

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