Ridiculously cautious optimism (a.k.a. Loving the little blue pills)

December 28, 2011

I love the little blue pills.  They’re like magic!

I really resisted when my rheumatologist wanted to prescribe a sleeping pill.  I’d tried sleeping pills (from a different doctor) before and I always felt drowsy the next day.  And the sleep wasn’t all that great.  They were just good for falling asleep when I was in a lot of pain.  Still, she insisted that I at least try these.  She prescribed the lowest dose and suggested that I start with half a pill.  She said that these are slow-acting, so instead of putting me to sleep, their job was to keep me asleep, and to give me some good sleep.  Well that sounded reasonable.  I had no trouble falling asleep, but I was waking up a lot.  I would only wake up for seconds at a time before falling asleep again, but I knew it was disruptive.  I woke up exhausted every morning.  So I picked up the little blue pills at the pharmacy, cut one in half, and gave it a chance.

Miraculous!  I woke up feeling good in the morning!  I’ve been taking half a pill every night for almost a week now and I feel almost like my old self.  I don’t have my full energy back, but I’m starting to see the light at the end of the tunnel.  Thank goodness!

This isn’t a long term solution.  I mean, it could be long term, but I refuse to take a sleeping pill every night unless it’s absolutely necessary.  Still, for now, it’s fantastic.  Hopefully it will allow me to gain back my old sleep habits.  But I’ll worry about the future later.  For now, I’m just so excited to not be fatigued all the time!

I am incredibly lucky.  This may last or it may not, but at least for now, I have a break from the fatigue.  I sincerely hope, with all my heart, that fellow fatigue sufferers will soon find some relief as well.  It has been one of my harder symptoms to handle.  I hope that one day soon it is better understood and that there are more treatments available.  We all deserve that.

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2 Comments | Medication, Raves, Symptoms | Permalink
Posted by chronicrants

The need for access to affordable healthcare for all

December 27, 2011

The so-called “Obamacare” plan has a lot of faults to it.  The process was overly politicized by a group of people with the best and most affordable healthcare in the country, the majority of whom could afford private care if they needed to.  They weren’t exactly representing “us.”

But like it or not as a whole, there are definitely some good parts to the plan.

For me, a great part is that health insurance companies will no longer (starting in 2014, but there’s a stop-gap plan until then) be able to turn someone away for having a pre-existing condition.  They also will not be able to find a convenient reason to end coverage shortly after someone is diagnosed with an expensive condition.  I believe there’s also something in there to prevent insurance companies from charging exceedingly high premiums to those with pre-existing conditions.  This is HUGE!  If I were to move to CA right now and I had to get my own insurance, I couldn’t do it.  I’ve seen their insurance company policies.  I’d be out before they got through the first page of my application.  But after this, they’ll have to insure me.  It’s a fantastic start.

But there’s still a long way to go.  There isn’t enough in there about making healthcare affordable.  I was talking to a friend last night who has always been perfectly healthy.  In fact, in the 10 years I’ve known her, I’ve never seen her have more than a sniffle.  She lives in CA and pays $300 a month for her health insurance.  I have no idea how much her company pays, but she gets it though them.  $300 is ridiculous for an individual plan.  Recently she has been having numbness in her left arm.  She went to the doctor, who sent her to a physical therapist.  She went to physical therapy three times.  It didn’t help.  And she got a bill for $400 (in addition to the copays she had already paid) for those three PT visits.  When she told me this yesterday I was in shock.  I wish I was there in person to review her policy.  She could have a deductible or co-insurance, but for $300 a month, she really shouldn’t have either.  Now she still has the problem and, with copays has paid about $500.  She doesn’t want to go back to the doctor because of the cost!  What kind of system is this!

I have been surprised had how many people are against “Obamacare.”  I suppose these are people who don’t pay for health insurance now and who are healthy.  They figure they’ll never need it.  I just hope they read this article and really consider it.  It could happen to anyone.  I eat well and take care of myself and get plenty of sleep and try to avoid stress.  And I have health problems.  I take a lot of medications and see a lot of doctors.  That’s not my fault.  And it’s not someone’s fault when they get cancer or get hit by a car.  And what if it were their fault?  Does that mean they shouldn’t get health insurance?  Well, I suppose that’s a discussion for another day.  In the meantime, let’s get people to consider just how important it is to have access to good, affordable healthcare.

The new system isn’t great, but it’s a start.

 

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2 Comments | Educating, Expectations, Healthcare, Limitations, Politics, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

Ode to my kick-ass coat

December 24, 2011

My winter coat rocks.  No, really.  It’s one of the best purchases I’ve ever made.  It may even be the best.

Think about it: how many items do you have that can directly improve your symptoms?  Yesterday I ate something that was great; the same dish made me incredibly sick the day before.  Good old IBS.

Last week I had fun picking up and holding my friends’ cat; today picking up that same cat hurt.  Good old connective tissue disease.

Two nights ago I slept for 7 hours and woke up feeling great; last night I slept for 8 hours and woke up feeling exhausted.  I took a 2 hour nap this afternoon and am still exhausted.  Good old autoimmune issues.

So what’s my point?  My point is that my wonderful coat protects me.  Today it was 28 degrees (F) when I left the house.  I have Raynaud’s.  This isn’t the worst of my problems, even when I don’t address it, but keeping in check can definitely help the other issues.  Luckily, I don’t have a severe version of it.  If I keep my core temperature warm, the rest isn’t as bad.

And this is where the coat comes in.  I have a “normal” wool coat that I wear when it’s in the 40s, and even in the upper 30s.  But when it gets below about 35 degrees, I pull out the monster down coat.  This thing is big.  It’s pink (oops – in the catalogue it looked red, but I wanted to wear it right away instead of exchanging it.)  I am short and this thing looks pretty silly on me.  A friend told me that I look like a big pink penguin; I wish she was wrong.  But it’s warm!  I can’t emphasize that enough.  Maybe I look silly, but I see people walking around with hunched shoulders, shivering, in coats that clearly aren’t good enough.  When I wear this thing, it feels like I’m wrapped in a sleeping bag, all warm and cozy.  As you can see, it zips high and has a big hood closure that covers and protects half of my face.  If I’m not driving, I always put my hands in the pockets without gloves and they stay perfectly warm.  I haven’t found a pair of gloves yet that comes close to working as well for my hands as those pockets.  With some good boots keeping my feet warm, the Raynaud’s stays at bay and I feel perfectly comfortable.  It’s wonderful!

Several years ago I spent approximately $120 for this amazing coat and it was worth every single penny.  If you live in a cold place and you can afford it, go out and get the best coat you can – it’s worth it.  You may look silly, but you’ll be warm!

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2 Comments | Decisions, Expectations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

The medicine of a simple visit

December 17, 2011

Knowing that I’ve been stuck at home a lot, my parents came over for a visit today.  They don’t live very far away, but they rarely visit.  Usually when we see each other it is at their house, where I grew up.  Since I’ve been staying closer to home, they came over for a visit with their pooch.

It was a simple visit.  We talked, we took a walk, we had dinner.  I pet the dog.  I played with the dog.  I sat with the dog.  It was an easy visit.  Today was a good day, and I felt up to moving around, which was great.  Having company was fantastic medicine.

When you’re fatigued, in pain, or otherwise stuck at home, remind your friends and family that visits can help.  So many of us get offers of help, but the truth is, I don’t always need help with errands or cooking, sometimes I just need some stress-free, activity-lite time with loved ones.  We all need to be alone at times, but we also all need to be around the people we care about and who care about us.  Sometimes it’s just that simple.

 

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2 Comments | Educating, Expectations, Isolation, Kindness, Limitations, Medication, Pain, Raves, Support, Symptoms, Thoughtfulness, Unpredictable | Permalink
Posted by chronicrants

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