5 things I wish I could do tonight

November 28, 2012

There are so many long term things I wish I could do, but sometimes I’m just very aware of the short term stuff that I’m missing out on.  Tonight, for example, I wish I could:

  • Get tired and sleepy at a decent hour.
  • Read a book without falling asleep too early.
  • Call up friends just to chat, without feeling awkward about the “So what’s new with you?” question. [Hint: absolutely nothing good is new.]
  • Go on a date.  Or have sex.  Or both.
  • Make plans for tomorrow that involve going to a job, volunteering, or otherwise using my time to help others and be productive.

For the next few hours I will sit in front of my computer.  I will type and read and learn.  Maybe at some point I’ll move to the couch and watch tv.  I will go to sleep later than I’d like, because even with supplements I just don’t get sleepy early.  Then tomorrow I will wake up tired, wishing I could feel more rested, and I will spend the day doing random things that don’t really add up to doing anything much for my community or for society at large.  Then I will do it all again.

Don’t get me wrong.  Some days I do more of what I want.  Some days I feel more useful.  Some days I don’t feel like I’m missing out.  This just isn’t one of those days.

What an honor!

November 26, 2012

I’m thrilled and honored to say that I’ve been nominated for the Unsung Hero award!  Thank you so much to all of my readers, and to whoever anonymously nominated me!

Ideally, this is where I’d post an image for you to click on so that you can endorse me.  Unfortunately, as you can see, for some reason WordPress won’t accept the html.  Go figure.  But luckily I can link to the image, so just click here to see it (and to endorse me if you so choose, but that’s really not necessary.)

But for any who are interested, you can see more information about the various awards here.  And please consider nominating someone from our community.  It is a great way to recognize the incredible work that so many are doing.  I have nominated others, and I hope that you will to.

Again, thank you for reading!

Getting bullied by bureaucracy

November 25, 2012

I was never one of the cool kids in school.  That didn’t bother me at the time, and it doesn’t bother me now.  It’s just a fact.  I had friends, and they weren’t considered “cool” either.  I studied and mostly got good grades.  I wasn’t athletic.  I didn’t participate in any of the “cool” clubs.  I didn’t act, and even worse, I did stage crew.  Yeah, I was one of those kids.

On the other hand, I was never bullied or subjected to peer pressure.  I didn’t drink, and no one ever tried to get me to drink.  I didn’t smoke or do drugs, and no one ever offered them to me.  I wasn’t teased or harassed.  Well, there was the boy who used to tease me and chase me around the playground when we were 8, but in hindsight I realize he probably did that because he liked me.  And anyway, he stopped doing it after I kicked him in the groin one day.  Someone tried to cheat off my work once, but there was no pressure.  I just noticed him looking at my paper during a test, and I guess I could have hidden the paper from him.  I hated that class and did really badly in it, so I didn’t bother to hide paper, and was sort of gratified when I got a C.  I never did find out his grade, but I gather it wasn’t so good.

I got through my entire life (so far) without being bullied in any of the standard ways, but now I realize that I’m being bullied after all!  I’m being bullied by the insurance companies.  This may not be the person-to-person bullying that others have experienced, but it still feels personal.  My life is horribly disrupted.  I think about it far more than I’d like to.  I may lose my home.  I have to be public about certain parts of my life that I’d rather keep private.  I’m being told they don’t believe me (essentially) and that they won’t give me what was promised to me.  I’ve spent hours brooding over the situation, trying to come up with nonexistent solutions.  I have enlisted the help of someone else, but still the bullying continues.  Standing up for myself only seems to prolong the misery.


There’s no perfect answer.  All I know is that I am sick (no pun intended) and tired (again, no pun intended) of being treated this way.  I want to get the benefits that I deserve!

My appeal was filed a week and a half ago.  By law the insurance company must respond (even if it’s only to ask for more time) within 45 days.  That puts it right at New Year’s Eve.  I don’t know what the new year will bring.  I hope, I desperately hope, I achingly hope that it does not bring more fighting.  But if I have to fight for my rights, then that’s what I’ll do.  Let’s hope it doesn’t come to that.

Why too much strength can be bad

November 20, 2012

When I had to leave my job last year, I expected everyone to be supportive.  The responses shocked me.

Yes, my close friends and family were very supportive.  Really, except for my sister (but there are other issues there), I couldn’t have asked for more.  It was amazing.  The shocking part was the number of people who seemed surprised when I left my job.  Many asked why I was leaving; it had never occurred to them that it could have been because of my health.

Over the years I’ve put on a brave face.  I do this partly because I don’t like to dwell on all the health crap.  I like to focus on the better parts of my life.  I do this partly so people don’t get annoyed that I complain too much.  I also do this partly because I feel like if I let my guard down and give in a little, that I’ll end up giving in a whole lot, and I won’t be able to keep things in control anymore.

I thought of that just now when I saw this on Facebook.  It’s so true.  I work hard to “keep it together,” to not dwell on the shit I deal with daily, and to appear ok.  And that means that most people have no idea what I deal with, even in the smallest way.  I’m not looking for every person I know to check in on me constantly, but I suppose I need to let them know at least a little bit about what’s happening.  After all, how can I expect to raise awareness when even the people in my life don’t realize how sick I am?  And on a much simpler note, I need to let people know so that they’ll understand that sometimes, I really just need a hug. Being strong is good, but some days, a hug makes all the difference.

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.

The rare CI benefit: helping others with a recent diagnosis

November 13, 2012

There aren’t many benefits to dealing with chronic illness.  I can only think of two.  The first is the one we all hear about constantly: a greater appreciation for what we do have, a better view on life, etc. etc. etc.  Sure, that’s all true, but hearing it gets tiresome, because it’s usually said with the implication that it makes all of the CI crap worthwhile.  I disagree.  I’d gladly give up my great insights if it meant greater health.  That’s a big reason why I started this blog.  But I digress.

The other benefit is being able to help others who are dealing with new diagnoses, which is what I did yesterday.

The first time I really experienced this was several years ago when my mother had a bad fall that resulted in multiple broken bones and kept her mostly off her feet for several months.  She became very grumpy, and my father had trouble transitioning to the role of caretaker.  I sat my mother down and explained that she needed an attitude change, like actually saying “thank you” occasionally, and not taking her frustration out on others.  Several times she started to say “But you don’t know what it’s like to be in so much pain….”  Then she’d remember who she was talking to.  She couldn’t use excuses with me, and so it forced her to confront her problems head-on and to address them.  I was also able to use my experience to help my father be a better caretaker.  After our talks, they did much better.

This week is less emotional at the moment and more practical, but I can see that the emotional parts will come soon.  A friend just got the official diagnosis that her son has autism.  She has been waiting for these evaluation results for a long time, and throughout the wait she spoke as if she already knew the results would be positive.  Of course, there’s a big difference between knowing and knowing, and she’s having a tough time now that it’s official.  We spent an hour and a half on the phone yesterday.  She griped about how poor the system is, knowing that I understood.  She vented about how frustrated she is trying to get answers, knowing I’d understand.  She didn’t talk about her feelings regarding the diagnosis, but I know she’s still processing that.

After a lot of complaining about our broken healthcare systems, my friend mentioned how impossible it is to understand health insurance plans.  That’s when she first told me that she’s in her open enrollment period, meaning that for a short time she can change her plan if she wants to, and she’s lucky enough to have two options through her job.  Unfortunately, it’s possible that neither option will cover her son’s needs.  Boy am I glad she brought this up!  I told her that I was around to help any time she wanted, but she just sounded so overwhelmed that I threw out a few off-handed comments about various health insurance provisions and, sure enough, one caught her attention as something she’d read but not understood.  For the next half hour we just focused on health insurance.  I explained deductibles, co-insurance, and out-of-pocket maximums.  I explained the way doctors can sometimes get exceptions to the coverage rules.  I covered a few of the things that might change in 2014 as the ACA goes into effect.  I told her what to ask when she calls the insurance companies’ customer service lines, and what kinds of notes to take.  I told her that if they said they would cover something, to insist that they send her that statement in writing.  We didn’t cover everything, but we covered a lot.  And I promised to come to her house next week to read over the paperwork myself, so see if I might pick up on something that she wouldn’t know to look for.

Having chronic illnesses sucks, no doubt about that.  Again, I’d gladly give up all of my insights if it meant better health.  Still, if I’m going to be stuck with this bullshit in my life, I’m glad that I can at least use it to help a dear friend.  She has a tough road ahead of her, and she knows it, but at least by the end of our conversation she sounded a bit less overwhelmed, a bit less terrified, and a bit more in control.  She is a smart, caring person, and a great mom.  I know she’ll do right by her son.  And I’m glad she can focus on that now instead of studying the fine print of health insurance paperwork.

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!

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