Taking a leap

September 30, 2011

Well I did it.  I took the leap.  After thinking about it and writing about it, I finally started the process of taking a medical leave of absence from my job.  I’m not happy to have to do this, but I’m hoping it will help me to feel better.

I have the best, most supportive family and friends.  I am so grateful to have them in my life.  I can’t imagine how I’d be managing all of this without their support.  I can’t say enough good things about them.  They’re amazing, wonderful, fantastic, loving, caring people.

And on that note, I am going to try to get some sleep now, to rest up from this emotionally exhausting day.  Here’s to tomorrow: a new start.


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Where’s the compassion?

September 29, 2011

Arrrgh!!  Some days are just so frustrating!

A lot of life is frustrating of course.  Fighting traffic, pushing through crowds, dealing with less-than-helpful customer support services, and fighting with uncooperative computers a la Office Space are typical daily frustrations.  But today I’m talking about people.

More specifically, I’m talking about people who lack compassion.  One day I wasn’t able to walk, so a friend and I did some shopping with me in a wheelchair, her pushing it.  There was the sweet teenager who saw us coming and ran ahead to open a door.  But then there was the woman who told us we were being too slow and rudely pushed her way past us.  Nice, huh?  Well, this second one is the type I’m talking about today.

In the last few days I’ve been hearing too many things, directly and indirectly, that demonstrate how much some people lack compassion.  There was the woman who told me, while talking about my health, that my “reputation is the most important thing.”  There’s a friend who needs an incredibly simple accommodation at work, he brought in the medical documentation, and he’s being given the runaround by his employer.  And non-health-related, there’s the person whose office scheduled a mandatory meeting for yesterday, the start of  Jewish holiday, and then gave her a hard time for leaving early to prepare for the holiday.

In many ways our culture is one of me, me, me.  Sometimes I see people thinking about the good of their neighborhood, the good of their community, or the good of society in general.  That’s a start.  Less often, I see people who try to put themselves in the places of their friends, neighbors, and colleagues and who try to truly understand their wants and needs.  It’s a shame; I really believe this world would be a better place if we all did that from time to time.  Yes, that sounds a bit Pollyanna-ish, but I believe it.  When an elderly woman comes onto the train with a cane, give up your seat.  And when a healthy-looking 20-something asks for your seat, believe they have a good reason, and give it up with a smile.  It’s possible you’ll make someone’s day just a bit easier.

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Can money buy (less bad) health?

September 28, 2011

This week’s carnival topic at ChronicBabe really piqued my interest.  I’ve never considered this exact question before, so I really gave it some thought.  The question is:

If you could receive one gift to help you through this life with illness, what would it be? It can be tangible or intangible, something for you alone or something for you to share.”

Before you read on, I hope you’ll give this some thought too.  What is it that you would want?  Got it?  Ok, now for mine….

I’m going to base mine on reality.  What I really want is a magic cure.  Unfortunately, I think that’s about as likely to happen this year as the

20120809_220808people of Boston obeying traffic signs (really people, is it so hard?)  My second choice would be a working crystal ball.  Sure, I’d feel lousy, but at least I’d know what to expect and how to plan for it.  But that’s right up there with tomorrow’s storm clouds raining chocolate instead of water.  So I’ll go with my third choice: money.  Yes, money.  Does that sound weird?  Ok, then I’ll explain.

I can imagine so many other possible gifts that could help me, but at the end of the day, it’s money that would enable them all.  I’m not saying that money is the most important thing to have.  I think it’s much more important to have love and support.  I am so lucky that I already have those things from my incredible family and friends.  It would be wonderful to have a significant other for additional support, but that’s not really something that comes in “gift” form, does it?  (But maybe it should!)  Money, on the other hand, could buy so much.

What would you do with some money?  I’m not talking about $50,000,000 from the lottery.  I mean, what if you magically had the same amount of money you earn either from the job you have or from the job you would have if you worked?  I don’t live an extravagant lifestyle.  If someone gave me enough money to live off of (I figure $1,000,000 invested well would provide enough interest for me to live off of indefinitely, or else if someone wanted to give me $30,000 a year) then I’d be doing so much better.  Money can’t buy health, but it can let me obtain things and do things that would improve my health, or at least stop its deterioration.

First, I’d quit my job.  No doubt.  I’m getting ready to take some disability leave, but that’s a short term solution at best.  I need to not work.  Without a job, I would do my physical therapy daily and go to the gym regularly.  I’d get proper sleep and really focus on my diet.  I’d spend more time with my family and friends.  I’d still have some time to fill, so I’d volunteer.  I love volunteering.  I could help people, but have enough flexibility in my schedule to take care of myself firstimg2 and foremost.  I know, I know, this sounds like those things people always say they’ll do but it never happens, right?  But I was unemployed for a quite a while not too long ago and I did these things and felt so much better.  I’d be thrilled to do it all again.

Next, I’d get massage therapy and acupuncture regularly.  I’m supposed to do that now, but who has the time or money or energy for such things?  I already spend thousands each year on my health, and time and energy are so scarce, being sucked away by my illnesses and by my job.

Now, if I had a lot of money, I’d buy a house.  It would be a nice little house, and it would have some health-improving luxuries that I lack now: laundry on a main floor so I wouldn’t wear myself out doing a single load; a parking space so I wouldn’t have the stress of searching for parking or the difficulty of Photo 1walking to and from more distant spaces; a ramp so I wouldn’t have to deal with stairs; central air conditioning so that summers would be a little less tortuous.  These are the luxuries I dream of.

Some nights I stay up late dreaming of winning the lottery.  What I’d do with the money is easy: I’d give money to loved ones, and I’d give huge gifts to my favorite nonprofits, I’d put it towards curing these illnesses we all have, and I’d feel better.  But getting it is pretty unlikely (but maybe just slightly less unlikely than the magic cure I mentioned earlier.)  Or maybe one day someone will click on the “Donate” button in the sidebar and give me some huge amount of money.  That’s not so likely either (right up there with flying pigs, perhaps?)  Instead, I’m trying to focus on the more likely things (like lots of small donations, or the stock market improving.)  I’m trying to be proactive.  My goal is to make the money for myself without working full time.  Sure, I’d love to get it as a gift, but in case that doesn’t happen, I’ll do the best I can on my own.  Starting a consulting business will be slow, but if it works, it will give me the flexibility of schedule and location that I need.  And before I know it, maybe I won’t be working “full time” anymore.  Ah, to dream….

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Health vs. Reputation: No Contest!

September 27, 2011

“The most important thing you have is your reputation.”


Yes, someone actually said that to me today, when we were talking about my health!  I was shocked.  I heard, “The most important thing you have is….” and I just assumed she’d end it with “your health.”  I can’t believe she didn’t!  I was talking to someone who works in a professional role dealing with employee health-related accommodations.  I wanted to figure out the whole short term disability thing.  She was saying that if I need it, I should do it.  It’s just that her reasoning was different from mine.  She was saying that it’s better that I take the time if I need it, than to stay in the job and let my work suffer.  She’s right.  She’s especially right because, legally, once I take disability they can’t fire me, but if I stay and do bad work, then they can fire me for sucking at my job (my words, not hers.)


She’s right, but shouldn’t the reasoning be that if I need the time I should take it, because the most important thing I have is my health, and I shouldn’t let it suffer for the sake of a job?  Shouldn’t it be that the insurance is there just for people like me, so we can use the time to get better?  Shouldn’t health always be more important than reputation?  I mean reputation matters (there’s no way I’d be writing this if my name was on this blog, for example), but isn’t it more important that we be healthy?


I guess everyone has different priorities.  Boy am I glad I don’t have hers!


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Sitting on the fence

September 26, 2011

Maybe “standing at the edge of a cliff” would be a better title for this post?  I’m on some sort of precipice, I know that much.


I’m the queen of self-denial.  I know that about myself.  I know it, but I have trouble changing it.  Making life-alter decisions is always difficult.  We all know that.  But how do you make those huge decisions based on incomplete information?  One of the most difficult aspects of chronic illnesses is how unpredictable they are.  If I knew, one way or another, how I’d feel in a few weeks or a few months, it would be so much easier to make these decisions.  If I do X I’ll still feel lousy, if I do Y I’ll feel better, but Y is hard, so maybe I’m willing to feel lousy with X.  But I’d know the result of each.  It’s so much harder when it’s a choice of X or Y, and I can only guess at the outcomes of each.  How do you guess?  How can I guess?


There’s no good way.  I know that I need to jump.  I know it.  But there’s definitely a part of me that’s in denial.  This other part thinks that maybe I don’t have to jump.  I’ve managed so well up to now.  It’s been 20 years of symptoms and I’ve done great.  I just need to keep doing what I’ve been doing.  It’s not like I have any concrete symptoms.  Nothing is visible.  But I know…. just because it isn’t visible, doesn’t make it any less real.


So, I’m making a public goal: In the next week, I’ll jump.  I’ll close my eyes and make the leap.  I’ll be sure to write an update when I do.  Until then, I’ll live in a denial for just a bit longer.


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Missing life

September 25, 2011

Do you ever feel like you’re missing out on life?  Yeah, me too.  Sometimes it’s missing out on an event and sometimes it’s missing out on entire days of, well, life.

Now, I understand that we all have limitations.  And yes, some of us have more limitations than others.  I just feel that if the limitations are to the extent that I’m not enjoying life for long periods of time, then what’s the point in living?  Something has to change.  As I’ve written before, for me that change will begin with taking some time off from my job and then returning as a part time worker.  Unfortunately, that’s not financially sustainable in the long term.  In the short term, though, it should give me a chance to get my sleep on track, exercise more, and play around with diet adjustments.  Plus, while it lasts, I hope to rejoin the outside world and return to my old social life.  Sure, my social life is limited by my abilities, and I can accept that.  I just can’t accept where I’m at right now.  I need more than this.  It’s time to be proactive and make some changes.

I wonder what kinds of proactive changes others are making to improve their lives?  Feel free to comment below.  It would be great if we could all help each other out with some new ideas.

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Making proactive life changes

September 24, 2011

Ever feel like your life is out of control?  Yeah, me too.  So I’ve decided to get control over at least some parts of it.


I can’t control my health.  Sure, I try to manage it the best that I can, but these illnesses will progress in some way no matter what I do.  So it’s time to take control of the non-health parts of my life, and hopefully I can improve my health in the process.


As I’ve said, working full time makes me feel lousy.  I’d rather work at my job part time, but then I couldn’t afford my current lifestyle.  Sure, I could cut back on some things, but my lifestyle really isn’t all that extravagant.  It’s not as if I were spending even $30,000 a year on expenses.  So I’ve decided to take some time off through short term disability insurance so that I can get my life in order, then I will work part time for a while and use some money I’ve saved up over the years to cover the gap.  After that….


…. and that’s what I’m working on now.  The next step.  It’s time to take proactive steps to improve things.  I woke up too early this morning, but my brain was swirling and I couldn’t sleep.  I’m so excited about the possibilities!  I’m working on setting up a consulting business.  I have no idea if I’ll be able to make significant money at it.  Maybe I can make enough to have it support me one day.  Maybe it will just make enough so that I can work in an office only part time and use the consulting to make up the salary gap.  But if I make any money off of it then it has a few big advantages:

1) I’d be my own boss!  I wouldn’t have to explain my sick days to anyone, or worry about their expectations of my health.

2) I’d have a more flexible schedule.  When I felt sick, I’d rest.  When I felt good, I’d work.  Yes, I’d still have to feel good enough to work enough to earn enough, but at least I could schedule it so that it worked best for me.

3) As a result of 1 and 2 I could exercise more, eat better, and overall take better care of myself.  I’d be in control of my life!


I know this may be an idealized view, but I have good reasons to believe that if I can make this business work, I’d be much happier with my life.  And I do have reason to think this business could work.  I’m racing against the clock now – the prep work takes a lot of time and effort, and I know I need to finish it while I’m still on the Prednisone and have the energy to get it done.  I expect to launch the business in a matter of weeks (or maybe days!)


I’m tired of being on this health and life see-saw.  One day is great, the next is lousy, the next is decent.  I want something more stable.  And I’m will to work hard to get it.  I sincerely hope that I succeed.


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