Good riddance 2011

December 31, 2011

I was going to write a great post for today, but then I fell asleep and that threw everything off.  So much for fabulous the little blue pills.  I fell asleep yesterday afternoon too.  Bah.

I’m determined to go out tonight so this will be short.  This was not a good year.  Actually, this year really sucked.  My romantic life was more pitiful than usual, my job was boring and stressful, I’m no longer on speaking terms with my sister, and my health nosedived.  That adds up to a lousy year.  Yes, there were some good things, but overall, I will be happy to see this year go.

So goodbye 2011.  I will hardly miss ye.  And hello 2012!  Let’s hope it’s a kick-ass year!  I wish you all a fantastic 2012!


Measuring symptom improvement… by way of a 2 year old

December 29, 2011

I knew the fatigue was getting bad when I’d be tired after 12 hours of sleep, then take a 3 hour nap that next day.  Now matter how you look at it, that’s not good.

Now that I’m feeling a bit better (thank you sleeping pills!) I haven’t been as tired and I haven’t taken any naps, intentional or otherwise.  Progress!  Yay!  Still, I know that I don’t have the energy of a “healthy” person, so maybe some of the progress is in my head?

Two weeks ago a friend had a timing conflict and needed someone to watch her kid.  I was so tired every day, but she was in a jamb, and she’s a good friend, plus I wanted to try and push myself a bit, I rested all day, then went over in the evening.  After a bit over an hour, I’d had it.  We’d been sitting most of the time, but I needed to be alert and engaging.  It was exhausting.  Thankfully, my friend’s husband came home a bit after that, and while I still played a bit with the kid, I could let my guard down and relax.  Still, by the time I went home I was beat.

Today I went over to take care of the same kid.  I went in the morning.  I got up with my alarm, and felt a bit tired at the time, but then felt much better as I got ready to start the day.  I had a ton of fun with the kid and wasn’t tired, even after more than two hours together.  I hung out for a while with my friend, then came home and listened to an audio book for a while (loving those audio books!) before I took a 35 minute (yay!) walk, stopping at the library on the way (I’m visiting the library a lot these days.)  I felt great after all of that!

So two weeks ago, an hour with a two year old wore me out completely.  Today, two hours with a two year old left me feeling as good as when I started.  The lesson?  The doctors shouldn’t measure our progress on those annoying 1-10 scales.  They should just put us in a room with a two year old and see how long we last.  After all, anyone who can keep up with a toddler must have at least something going right!

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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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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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Dreading the worst-timing-possible interview

December 26, 2011

I am dreading tomorrow’s job interview.

It’s not the interview itself that’s the problem.  I love the organization and I’ve wanted to work there for years.  The thing is, it’s probably going to force me to make some guesses that I don’t want to make.  At the very least, it will force me to lie.

I’ve been on a medical leave of absence from my current job for almost three months now.  When I left, I told them I would be gone three months.  I really believed I wouldn’t need longer, but I was clearly wrong.  I figure I need another month or two at least.  Scarily, it may be more.

I didn’t actively look for jobs while I was on leave.  To be honest, I don’t like my job, but I just didn’t have the energy to look for something else.  Then a friend emailed me that his company was looking to hire, and it’s a position that I’m qualified for.  I had told him many times to let me know if anything ever came up because I would love to work there, so I couldn’t pass this up.  It’s a part-time job, which on the downside means less money, but then again, it would be better for my health.

So what’s the problem?  If they want someone to start right away, I can’t.  Even for part-time work, I’m just not ready for it.  Too many days I feel lousy.  Just going to the job interview will be all the activity I can handle tomorrow.  And when they ask about my current job, which they will, I’ll have to talk in the present tense, as if I’ve actually been doing the work recently.  I will have to lie by omission and not tell them I’m on leave.  When they ask why I want part-time work, I will have to say that I’ve been wanting a better work-life balance.  This is true, but it sure does avoid the most obvious reason.  And if they actually do offer me the job at some point, which is possible, what would I say?  Would I be ready to work?  I just can’t imagine.

The timing of this is lousy.  Up until 6 months ago, it would have been so easy to just go 110% for this job.  Now, I’m not sure if it’s even worth going to the interview.  Someplace in the back of my brain I know that it’s good to keep my options open, but really, I’d rather just hide under the bed for a while.  I know there’s some positivity somewhere in me.  I sure hope I can get it out in time for the interview.

 

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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 warmI 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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Are there enough doctors?

December 21, 2011

According to this article, the largest concentration of doctors in the United States is right here in Massachusetts.  So then why am I having so much trouble finding one I like?

Keep in mind, this is based on a per capita count, so it’s about how many doctors there are for every 100,000 residents and not on how many there are total.  Compared to the national average, good old Mass. is going great.  Of course, this doesn’t tell us how many of these doctors are specialists and how many are internists or family practitioners.  It also doesn’t tell us how many of them treat patients full time versus focusing on research.  For example, I have one doctor, a specialist, who does research most days and only sees patients two days a week.  How would he be counted?

But more than any of that, my big concern is that this article speaks about the distribution of doctors as if that were the biggest problem with getting a doctor.  Let’s forget about money, because that’s a different problem altogether.  What bothers me is the idea that if doctors were distributed more evenly, everything would automatically work out better.  But has anyone checked to see if there are enough doctors in this country?  Sure, Massachusetts has more doctors per capita than any other state, but does it have enough doctors?  Does it have the right type of doctors?  I called many potential PCPs this year and was told by each that they weren’t taking on new patients.  That’s in line with what I have been reading about PCP shortages.

Now, maybe I just called the wrong ones.  Maybe there’s a shortage.  Maybe that was a temporary problem that was magically fixed the next week.  Regardless, we need to figure out how many doctors, and what specialties, are needed in order to properly care for our population.  I agree that we need to have an even distribution of doctors, but that only works if there are enough.

 

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