Sometimes “fate” intervenes

April 17, 2012

I wonder sometimes about timing.  Maybe if I had sat in the next subway car over that day I’d have run into a friend.  Maybe if I hadn’t been running late the other night I would have met a new business contact.  I don’t believe in fate.  I don’t think there’s some force controlling things.  But I do think that sometimes timing is everything.

After this weekend’s great walks, I decided to keep up the momentum, at least to some degree.  Ok, I won’t be walking 3 miles every day, but I know I need to do more than what I was doing before the trip.  So today I promised myself I’d take a long-ish walk.  A mile seemed like a reasonable goal.  But it was too hot.  So I ate some ice cream.  Still too hot.  I sat in front of a fan and watched tv for a while.  Yup, still too hot.  I ate dinner.  Ok, it had cooled off enough, time to get off my ass and walk!

I debated washing the dinner dishes, then decided to let them wait.  I don’t usually do that, but I wanted to get out before it got dark.  I could have changed my clothes or checked an email, but instead I rushed to leave so that I would be sure to take the walk.  What if I had delayed leaving for any reason?  On the walk, I slowed down to chat with a nice guy with a cute dog.  I’m a sucker for a cute dog.  What if I hadn’t slowed down?  I finished the big loop and ended up back at my building.  I could have stopped, but I pushed myself to also do the smaller loop that I had already planned to do.  What if I had skipped that?  At the far end of the loop, before turning back towards home, I decided to push myself and do a bit more.  I started walking a longer route home.  What if I had turned back when I planned?  But I didn’t.

And that’s how I turned a corner and saw a blind woman in the road.  It was a relatively quiet one way street, and the car had stopped and was waiting patiently.  The woman was in the middle of the wide street and she turned left, moved her cane, then turned right, moved the cane some more, then turned left again.  A guy across the street was watching this, clearly not sure what to do.  How many of us have been in the same position?  I’m guessing most of us have been on the receiving end of this internal debate: is it better to risk offending someone by offering potentially unwanted help, or to risk letting someone struggle by not offering potentially needed help?

I called out to the woman to ask if she needed help, and she gratefully said yes.  She was on her way to the T and had gotten turned around.  I led her back to the sidewalk.  She asked if I was going to the T and I said no, but that I was walking past it, which was true.  She immediately slipped her hand onto my arm and asked if I’d lead her there.  Of course I was glad to.  We joked and laughed about how we hold ourselves to high standards, trying to be perfect despite our disabilities.  She, of course, had no idea what mine were, but that didn’t matter.  We had a nice chat, and then I left her off at the door to the train station and continued on home.

There are dozens of ways we might have missed each other.  I don’t believe in fate, but I am so glad the timing worked out so that I could help someone else.  It is so easy to become absorbed in our own health issues, and it meant a lot to me that I was able to get outside of that to help a stranger.  I am sure she would have eventually made it to the station without my help, but I hope that I made her night a little better.

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Being treated like a child

March 30, 2012

“Remember, you don’t have to bring anything to the brunch.  No food, no flowers, just save your money and take care of yourself.”

I know my mother means well.  Her instinct is to take care of me.  But I’m getting sick of it.  And it’s not just her.

I appreciate that people want to help.  I really do.  It’s sweet.  But I’m an adult, and if I say that I want to bring something to a family brunch, then why stop me?  Everyone else is bringing something.  If I didn’t feel up to it then I wouldn’t offer, but if I want to contribute, why stop me?  A few years ago this made sense – my cooking was atrocious.  But now I can cook and I’ve been bringing food to potlucks for many years.  And hell, I can at least put together a fruit salad!  Either way, I can make a contribution.

What bothers me most, I suppose, is that people don’t trust my judgement.  I say I can do something, and they still want to protect me. It’s nice when people want to help, but it’s demeaning when they go too far.

So tomorrow I will have a little chat with my mother and I’ll try to explain this.  I will point out that she isn’t trying to stop my younger sister from bringing food, so why try to stop me?  I’m capable of it, so it’s my choice.  I just hope she understands and can fight her motherly instinct.

After all, I’m not a child anymore.

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Rheumatology rock star

March 24, 2012

My rheumatologist is fantastic!  She sets the gold standard for medical care.  She went above and beyond yesterday!

I am very picky about doctors.  Actually, that’s a huge understatement.  I’ve received a lot of poor care over the years.  There was the pediatric surgeon with no compassion.  There was the internist who lied and told me a certain test didn’t exist even though it did.  There were the several who ignored my theories of what was happening with my body (and it turns out I was right.)  There were the many who simply wouldn’t admit when they didn’t have an answer.  That’s one of my biggest criteria: every doctor I see must be willing to admit ignorance when it’s warranted.  My standards are high, and I won’t accept inferior treatment any more.

At my first appointment with this rheumatologist, I told her early on that I understood that my condition didn’t have a particular name and that I was ok with that.  She looked downright relieved, then told me how it can take patients many years to accept that.  She was glad we could move on and focus on treatments.  I knew then that I liked her.  She understood.

Over the last several years she has been helpful and caring.  She only works three days a week, but if I leave a message with an urgent situation, she’ll call me back on her days off.  She’ll call me at 7pm if she’s been with patients all day.  I can always trust that she’ll call.  When I need to be seen and her schedule is booked, she always finds a way to squeeze me in.  She tells me when she doesn’t know what to do.  She’ll ask what I want to do.  She listens to my thoughts and theories and takes me seriously.  She trusts my assessment of my body, but conducts her own assessment as well.  I can actually trust her.  That’s not something I do easily.  And, of course, she’s good at what she does.  She’s knowledgeable.  She’s worked with other patients with my unique rheumatological situation.  If I ask her about something she’s not completely familiar with, she researches it and gets back to me.

But this week she really outdid herself.  I was blown away!  I’ve been on edge about signing up for disability insurance.  To make matters worse, there will be a big gap between short term and long term disability.  This is mostly because I got the paperwork for the insurance application on the first day of my rheumatologist’s 10 day vacation.  She’d told me she was going on vacation, but I didn’t realize what the timing of the paperwork would be.  Well, there was nothing I could do.  I sent her the forms, along with a note about the timing, asking that she not wait until our next appointment to fill it out.  I know how hectic things are after a vacation, but she’s been so responsive that I hoped she might do it within a week of getting back.  Boy was I wrong!

She got back from vacation on Thursday.  Early Friday morning she responded to my email and asked if she could call me later in the day to discuss the forms.  She called at the exact time she had said and then filled out the forms while we were on the phone!  She told me what she was writing and asked me questions about the various sections.  She told me she wanted to get it done right away because of my timing issue, then she apologized for not calling the day before!  She said she had to spend that first day catching up from vacation, which of course I understood!  Plus, we had a temperature and humidity spike last week, so I’m guessing that many of her patients were calling.  This paperwork is important to me, and I’m nervous about it, but I never expected her to do it on her second day back!  Her forms will get to the insurance company before mine!  (She faxed hers and I have to mail mine.)

I’m not thrilled with my endocrinologist right now, and I need a new gastroenterologist, and I might need to see a neurologist, and I’m not crazy about my PCP, but thank goodness that the one doctor I rely on the most, the one who provides so much of my care, is so fantastic!  I wish I could find more like her.  I wish we all could!

Good luck to you all in your search for good doctors.  Let’s hope there are plenty more like this one.  We all deserve them.

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Raising the bar on thoughtfulness

January 31, 2012

With all the shit forced on us all from CIs, sometimes a little thoughtfulness can go a really long way.

A close friend of mine had a baby about a week ago.  Leading up to the birth, I was so excited that she joked that her mother was the only person more excited than I was.  It was an exciting birth, but everything went smoothly and they’re all happy, healthy, and at home.

Unfortunately, the timing wasn’t great for me to visit – I had family flying in from all over the country just a few days after the birth, all coming to attend a bit family event this past weekend, so I had to delay my visit.  Finally, the day was approaching.  She lives two hours away.  Normally I visit for a few days at a time, but when her first child was born, I drove out for just a few hours, then drove home.  That was a very long day.  It was a Saturday, and I rested the next day and then went to work on Monday.  It was exhausting.  I did the same with her second child.

This time around I’m not working, but since I’m not feeling well, it will probably be more exhausting than the other visits.  Still, I can’t wait to meet the little guy!

Then yesterday my friend called – the older kids have colds.  The colds aren’t bad, but she wanted to warn me.  How thoughtful is that?!?  She’s juggling two little kids and a newborn infant, and she’s worried about my crappy immune system.  She’s just so sweet.

We’ve been friends for ages, since back when my only symptom was pain (ah, the good ole days), and so she understands better than most what I deal with, even though I hide a lot from the world (not just from her.)  And she knows that it’s not just about me being in a germy house – with little kids around, the germs spread more, and there’s no way I’ll visit without hugging the kids and playing with them.

It’s an easy solution – we’re just putting off the visit for a few days, to make sure everyone is healthy (oh, the torture of having to wait to see the little baby!)  But I know too many people who don’t think that way.  I see people shake hands when they have colds, cough into hands and then touch doorknobs, and generally be inconsiderate to the world around them.

How lucky am I to have a friend who is this thoughtful?  We all need to have someone in our lives like this.  She’s certainly set the bar pretty high for everyone else…..

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