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

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.

7 Comments | Educating, Expectations, Frustration, Healthcare, Isolation, Kindness, Raves, Support | 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

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

« Previous Entries
Next Entries »