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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Welcome back nausea

September 23, 2011

Well, maybe “welcome” isn’t the best word.


I started my most recent round of Prednisone back in April.  Now, 5 months later, I’m slowly lowering the dose.  I’ve tried to lower the dose three times already, but each time I had the symptoms return and had to up the dose again.  This time, so far, it’s going ok.  Except for the return of symptoms.


Back in April, I had tried a few alternatives with no luck, so I returned to Prednisone.  It comes with many side effects, as most of us know.  Sure, long term I may be at risk for osteoporosis or heart problems, but right now I’m focused on the short term side effects.  Let’s see… there was the hyperactivity.  I kept talking too much and too fast, even faster than normal (which is already too fast.)  I was always hungry.  I wasn’t sleeping as much.  I gained back all of the weight that I had just finished losing from the last round of Prednisone, years earlier.  But then there were the good side effects.  I had a lot of energy.  The fatigue was mostly gone.  And the nausea went away.  Oh, that was heaven.


As I’ve lowered the dose of Prednisone I’ve noticed a drop in energy.  This has been difficult and frustrating.  I loved being able to keep up (well, somewhat) with my friends.  I’ve been trying to adjust back to my “old” levels.  But then yesterday the nausea hit me.  After months of almost no nausea, I had started to get used to it.  I could eat whatever I wanted (within my limited diet) and feel just fine.  I didn’t have to worry about feeling horrible for no reason.  I could simply eat a meal or a snack.  Easy.  It was bliss.  Then yesterday, my stomach was bothering me in the afternoon.  It wasn’t my period.  It couldn’t be what I’d eaten.  It wasn’t the amount I’d eaten.  It felt almost like…. BAM!  It hit me.  I knew what it was.  The symptoms were back.  And, sure enough, I had a perfectly good dinner tonight, healthy and well-proportioned and conforming to my diet, and felt horrible afterwards.  Oh yeah, I’m returning to normal all right.  Too bad.  I really loved not feeling nauseated on a near-daily basis.  What a wonderful treat.


Still, there’s nothing much I can do about it.  So it’s time to stock up on the foods and such that make me feel better (carbs, mint, Pepto, etc.) and just deal with it.  It sucks, but there’s nothing to be done.  At least I’ll be at less risk of osteoporosis and whatever other side effects Prednisone causes.  I guess that’s a good thing.  Sort of.


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