Baby steps: learning to stand, walk, and sit at age 32

March 26, 2012

It’s a natural progression: babies learn to roll over, then to crawl, then to stand, then to walk.  Easy, right?  Apparently not.

A couple years ago I was in physical therapy, having knotted muscles worked on, when my physical therapist decided I was ready for the next step: learning to stand.  Now, I’d been standing for years.  Sure, I never crawled, but I did go through all of those other stages, and I knew how to stand.  Yeah, it was painful to stand for more than a minute or so, but it’s not like I didn’t know how to do it.  Well, apparently I didn’t.

It turns out I’d been standing wrong my entire life!  I was putting my weight on the wrong part of my feet and that was throwing everything off!  This was quite a shock.  So I started working on how to stand and walk.  And it turns out I needed to work on sitting too – I was sitting on the wrong part of my ass.  This sounds like a joke to some people, but I swear it’s the truth.  Some of you may even be dealing with the same problem.

Eventually I “graduated” enough that I could work on the exercises at home.  I made some progress, but then the fatigue hit me last year and I stopped doing my exercises altogether.  So now I’m back in PT, trying to regain what I’ve lost.  And today, we worked once again on how to stand properly.  It’s infuriating to have to think about how I’m standing!  Then she had me walk around the room, and I had to think about how to do that too!

I’m perfectly happy to do this, of course, if it works.  I just really hope it works!  And in the meantime, I feel like a one-year-old all over again.

Head up, chin down, belly in, hips even, weight on heel, and…. go!

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

2 Comments | Educating, Expectations, Frustration, Limitations, Medication, Milestones, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Springing past winter into summer

March 21, 2012

I don’t care what your views are on climate change, you have to admit that this has been a very odd winter in Boston.  In my entire life, I’ve never seen a winter like this, and people twice my age are saying the same thing.  We only had two snowfalls worth shoveling, and even those were measured in inches, not feet.  They even melted within a few days.

Wondering what a normal Boston winter is like?  I took this picture in January 2005.  Yeah, exactly.  And this winter?  This winter we hardly had any snow at all.  We saw clear pavement and grass almost the entire winter.  Other parts of Mass. got real snow, but not us.

Most people loved this.  To be honest, I enjoyed it too.  We still had some cold weather, but I don’t mind bundling up in my extra warm coat.  The great part was not having to worry about shoveling out my car or slipping on the ice – because there wasn’t any!  Woo hoo!  I loved not having to worry about my footing (at least, not any more than usual.)

And now I’m starting to pay the price.  When I was a kid in the 1980s, spring started in March.  I used to think I had imagined that, but then I came across an old home video dated March 1986 or so, and sure enough, we kids were outside playing in pants and t-shirts – and no coats.  But then in the ’90s we started getting snow through March and into April, and that became the new norm.  We hearty Bostonians grumpily adjusted to spring starting in April, or even in May.

Today, March 21, it was 80 degrees.  I knew there was a problem within a minute of getting out of bed.  It took me a minute to figure it out.  It was early, so the temp wasn’t too high yet.  And then I realized: the dew point.  I went online and, sure enough, the dew point was 58!  That’s  too high!  At 58 I’m generally already having flares of pain, fatigue, and GI issues.  At 60 I turn on the a/c and avoid leaving the house.  But the a/c isn’t in the window yet, it’s still in the basement, because it’s fucking March!  It’s still winter!

Needless to say, this wasn’t my best day.  It wasn’t the worst, though.  I quickly closed all of my windows this morning and pulled down the shades, and the apartment actually stayed fairly cool.  Too bad that won’t work through the summer.  And I used a/c in the car.  And I drank a lot of water.  Hello Spring.

Mother Nature threw us all for a loop and there’s nothing we can do about it.  I’m glad that in a couple more days the temps will drop 20 degrees.  Everyone else has been going on and on about how fabulous the weather was today, and they couldn’t understand why I didn’t agree.  I guess you’d have to be in a body like mine to understand that.  Personally, I’m looking forward to fall already, to those beautifully crisp autumn days.  Until then, I’m grateful for air conditioners and fans!

 

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If you can relate to this, please pass it along and share the camaraderie!  Thanks!

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Disability insurance: Where’s the fairness?

March 20, 2012

In about two weeks my short term disability (STD) insurance will end.  My health will probably be no different than it is today, but my insurance will disappear.  Luckily, I paid into my company’s long term disability (LTD) insurance.  Last week I got all sorts of information about this benefit.  I learned how much it will pay, how the money will be taxed, and how my other benefits, such as health insurance and the FSA, will be affected.  Of course, this is assuming that I get LTD.

My rheumatologist has been on vacation for over a week.  When she gets back later this week, she will find some forms that are waiting for her at the office (assuming the postal service delivered them on time.)  I hope that she fills out these forms and sends them in quickly.  I must fill out my own set of forms, with crazy questions like asking me to list all of the illnesses I’ve had in the last 5 years, and send them in.  And then I wait.  I wait and I hope that my application is approved the first time around.  As I wrote a couple of weeks ago, after years of people not believing that I had a real health problem, I still get nervous about this kind of paperwork.

Still, I will probably be approved.  I now have years of medical records that document my condition, and doctors who will explain why I can’t work.  I feel so fortunate.  The payout is decent – enough to pay all of my bills if I’m frugal.  I get to keep my (very decent) health insurance.  I lose some benefits, such as the FSA, but so be it.  I can even work to a certain extent while I am on LTD (when I eventually feel up to it.)  This is all much better than what I had expected.  But there’s one thing that really bothers me: fairness.

Ok, the world isn’t fair.  We all know this.  Still, it doesn’t seem right that I get this benefit because I worked at a company that provides LTD, while so many others do not.  If I had gotten sick 10 years ago, I’d simply be unemployed now.  And if my current inability to work doesn’t improve within the 2 years that I have LTD?  Then what?  Social security is a joke – it wouldn’t even cover my rent right now.  Even if I moved out of state to an area with a lower cost of living, it wouldn’t be enough.  I would be on Medicaid and food stamps and would still have trouble paying the bills.  Is this the way we want our system to work?

I feel so grateful for the amazing benefits I have, and so horrified that they are not standard.  I can not understand why more people don’t stand up and insist on receiving these kinds of benefits.  I suppose everyone thinks it won’t happen to them.  That’s what I used to think.  But most of us know someone who has had to deal with illness, so isn’t it just possible that it could affect us too?  We need outrage right now.  I’m too tired to fight for this kind of universal benefit right now, but when I get my energy back, when I’m feeling better, it will be right near the top of my list.  When I go back to work, I want to fight for equality and fairness.  It’s an uphill battle, but one that I look forward to fighting.

 

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If you can relate to this, please pass it along!  Thanks!

5 Comments | Educating, Expectations, Frustration, Healthcare, Job, Politics, Rants, Unpredictable | Permalink
Posted by chronicrants

Where’s my crystal ball?

March 13, 2012

There are so many reasons why it would be nice to see the future.  I’d love to know if I’ll ever get married.  Will I have kids?  Will I get a better job?  Will my family be happy and healthy?

But right now I want to see the future for a different reason.  I accepted certain parts of my illness a long time ago, but this current downslide is different.  This is something that I never expected, and I’m aching to find out if I will get better… or not.  If I won’t get better, then at least I can try and learn to accept it, but if there’s a chance that I could improve then I’ll keep fighting.

I came up with an action plan today.  There are a lot of -ologists involved.  I’ll try everything from an endocrinologist to a hematologist, from a psychiatrist to a neurologist, but it would help so much to know if any of them will work before I spend a lot of time, energy and money on them. And I want to know if I’ll ever go back to work, if I’ll ever have the energy to really date again, if I’ll be able to go out for an entire afternoon again.

There are no certainties in life.  Health is unpredictable.  We just have to take things as they come.  Who hasn’t heard all of this before?  I can’t argue with it – it’s all true.  But I’d still rather have a crystal ball right now.

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If you can relate to this, please pass it along!  Thanks!

2 Comments | Expectations, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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