Tag Archives: congestive heart failure

Party Time

On January 5, 2005, I was diagnosed with Congestive Heart Failure.  Ten glorious, active years later, I am still going strong.  It’s time to party!

I want to dine, drink a toast, sing and dance endlessly with all of you who have been on the journey with me, prayed for me, supported my husband and me, sent me home when I was tired, helped me decorate for parties,  rejoiced, cried, and laughed with me.  Thank you for dancing this new dance of life with me.

In December, when I realized that my tenth anniversary was around the corner, I decided this event is worth an entire month of celebration.  I gave flowers to my doctor’s staff and high-fived my doctor as his eyes glistened.  I planned to get together for coffee and meals with friends–old and new–who have danced this new dance with me.  January 2015 was going to be a wonderful contrast to the somber tones of January 2005:  This January would be full of celebration, energy, and joy.

images9CG2FYJBBut January didn’t happen the way I planned.  Air pollution hung over the Los Angeles Basin for days at a time.  Instead of partying, I spent most weeks sedentary and cooped up in my house to keep my lungs healthy.  This was not the January I anticipated, dreamed about and wanted.

After weeks of trying to keep a good attitude (not always successfully), I realized that no rule book says the celebrations have to happen in January.  I can just postpone them by a month.  I dreamed up the idea of celebrating all month in the first place and I can change it.  I just needed to think about it in a new way.  Here is the new plan:  party in February.

Yes, I would have preferred being out-and-about this month, seeing friends, hiking in the hills, and celebrating life with toasts and a broad smile.  On the other hand, since that wasn’t possible, I will consider this latest experience an ironic reminder of how my life and plans turned upside down ten years ago this month.   Maybe January 2015 was an appropriate anniversary, after all.  Postponing my wining and dining for a month is a small adjustment compared to what I have already done.  I can do this one, too.

80919389_0ea063f00b[1]Get ready to celebrate, wherever you are.  February is coming.  Salute!

L.A. Snow Day

imagesUKL5P5N9Yeah, yeah, I know:  we don’t have snow days in Los Angeles.  Except for me.  I had a snow day this week right here in Pasadena, California.  Of course, with roses blooming in my garden and a lime tree covered in fruit it required a bit of imagination.

I missed snow days when I moved from the land of freezing winters to the land of sunshine and palm trees. Snow days often bring power outages and travel delays, but they also give a guilt-free reason to cancel everything and slow down the pace of life. Who can argue when the governor or school superintendent tells everyone to stay home?

When smog made me cancel my calendar for two days this week and stay inside my house, I had a brainstorm.  I said, “Self, these are snow days. You love snow days. Pretend you’re in Upstate New York again and this is a snow day.”

Every time I felt frustrated at where I couldn’t go and what I couldn’t do, I filled myself with remembered feelings of coziness, leisurely reading on the sofa, comforting smells from the kitchen, and relaxed puttering around the house.

It worked.  For two days I kept frustration at bay with the wackiness of my imagination.  Then the weather changed and cleared the air, which is good because even actual snow days give me cabin fever after 48 hours and I don’t think I could have sustained my willing suspension of disbelief much longer.

My snow day/smog day framework improved my attitude by changing how I reacted to the smog.  I consciously chose how to perceive my limitations, chose how to act, and chose my attitude.

Life is all about choices, after all, some writ large and others known only to us. I chose to have a snow day in L.A. and it made all the difference.

Some Days Are Like That

If you’re looking for happiness, hope, and inspiration, come back another day.  This isn’t it.  One of the first rules of good writing is honesty.  So, here it is.  This post is about living honestly on those days that don’t feel very good.

As I have written recently, the last few months were difficult health-wise and turned me into a hermit.  This extrovert makes a horrible hermit.  I feel isolated and depressed.  It shuts down my voice.  I feel invisible, little, and useless to the world.  Even moments of joy, laughter or appreciation of beauty are fleeting.  I reach out to others with goodness when I can, but even that feels momentary.  It’s been frustrating, to say the least.

I lost my voice and coughed constantly.  My lung capacity dropped 40% again, so I had little energy for anything and was barely able to exercise or walk down the block.  I felt crummy.  My two conversation groups disbanded.  Life became so boring I felt I had nothing to say to anyone.  I trusted if I kept working the program of medication, rest, gradual increasing activity, and trying for a positive attitude I’d eventually return to a fuller, more meaningful life again.  But in the meantime, it was uninspiring to write or talk about my life.  It isn’t the kind of stuff I want to share with anyone.  After all, who really wants to hear it?

Like many people with chronic illness, I have good days and bad, and some that are just ….. there.  There’s not much to say about them except they’re frustrating and not how we want to be living.  Some days are just like that and there’s nothing to do about them.

For myself, I hate to share how I am doing at such times.  I feel like I’m whining and complaining.  I don’t want pity or sympathy, advice or problem solving, well-meaning as they might be.  I don’t want to have to take care of listeners’ discomfort with the unpleasantness of my life and the vulnerability of theirs–I have enough on my own to take care of.  I don’t want people to tell me things will get better, or to look on the bright side, or to have faith, or to say they understand how I feel.  Unless they’ve actually been in my very situation, they don’t know how I feel.

Sometimes I don’t know what I want from others, I just know life stinks and is boring and frustrating now.  I just want the people I’m speaking with or those reading what I have written to be O.K. being uncomfortable, to know they don’t have to fix me, and to recognize that even people they respect and admire still have crummy times but that doesn’t mean we’re going to stay in that space forever or jump off a cliff.  I want people who are uncomfortable to know it’s O.K. to be uncomfortable, but please don’t inflict it on others.  Just listen, accept the crumminess of it, and respond with a version of “That really sucks.”  Yes, it does.  For me, and I think for many people with chronic illness, that’s all we want.

cropped-billingsley2520creek_full1.jpgBecause I don’t want to sound like a whiner or to add to others’ discomfort, I withdraw into myself and retreat from others when my life is crummy.  Taking care of other people’s discomfort–or even having to listen to it–takes too much energy and gets too depressing.  I don’t want to build friendships on the dishonesty of pretending my life is something it isn’t, so I withdraw.

Likewise with my writing.  Anything I write that doesn’t come from an honest place in myself is noticeably hollow.  The dishonesty is transparent and uncomfortable to readers.  But if I write honestly at those times, it sounds depressing.  So, I stop writing in order not to seem depressing.  This time, after a week of finally trying to write an up-lifting, helpful, insightful post and finding every attempt deadly boring and useless, I decided to go for honesty.

Even though I hesitate to write this blog post, here it is:  honest.  The reality is that just because life is crummy today doesn’t mean it will be tomorrow.  And if tomorrow is wonderful (as was the weekend I spent with my children and granddaughter recently), another crummy day is around the corner.  That’s how life is with chronic illness, or grief, or care-giving, or aging, or any number of other types of unpleasantness. Some days are like that for us.

Please don’t try to fix us or give us advice.  Don’t worry too much about us or give us too much sympathy.  Agree with us that it stinks, it sucks, it’s lousy, that it is probably really frustrating and maybe even unfair.  It is all those things. Some days are like that.  And then we’ll move on in our conversation and our journey.  After all, unpleasantness is just part of life.

Photo by Barbara Anderson outside Hailey, Idaho, May 2012