Tag Archives: Disability

Life in a Bomb Shelter

Pantry Shelf in My Bomb Shelter House

O.K., my house isn’t really a bomb shelter.  But for ten days, it felt like it was I’ve wanted strong pollution standards for a long time, but now it’s gotten personal.  Maybe it has for you, too.  If so, here’s help.

In addition to air conditioning, three room air purifiers, and a HEPA filter on my cold air return.  I just added two new Austin air purifiers(www.austinair.com).  The new ones make it possible for me to live in my whole house–although often I can’t stay in the kitchen long enough to do the dishes! Sometimes, I’m still stuck in just one room to breathe without complications.

I can do everything in my control to be healthy, and still risk my health when I go outside if the air quality is poor.  I’m eager for everything we can do to cut air pollution, including the newly approved standards on clean air.  Air quality affects both quality and length of life for many of us.

Right now, everything I do outdoors–running errands, watering my garden, or meeting a friend for lunch–depends on checking hourly updates from the Air Quality Management District (www.AQMD.gov).  On the air quality index, zero-50 is good; 51- 100 (yellow) is dangerous for highly sensitive people (that includes me); 101-150 is dangerous for young children, the elderly and those with respiratory or heart conditions.  At 151-200 (red), everyone should limit outdoor exertion, and 201-250 (maroon) is dangerous for everyoneCheck out the website: the info’s good and the animation’s fun.

According to my doctor, many of us begin having trouble when the index reaches only 70.  Wow!  At 70, I turn on my air purifying technology, and at 100, try not to go outdoors at all.  Add the negative impact of high temperatures for heart patients, and I’m cooked!

I had no idea that air pollution could cause such problems until they landed on my doorstep with myasthma and heart issues.  As a claustrophobic extrovert who loves being outdoors, I can’t stand it!!!

A rose in my garden

Good news:  I came out of my bomb shelter Monday and took deep breaths of clean air.  It’s lasted all week.  I took my dogs for a walk one day, partied outdoors one evening, and gardened today.  I kept the windows open every night.

I plan to go wild this weekend! I’ll drive with my windows down.  I’ll live at an outdoor café.  I’ll visit my favorite stream and listen to water run off the mountain.  I’ll read on my chaise lounge, and linger over meals on the patio.  It sounds really tame, but compared to last week, it’s sheer decadence!

I’ll retreat to my bomb shelter next week and go nuts again.   Maybe I’ll decorate my facemasks with colored ink or sequins this time.  I gotta find a way to make this fun!

Learning:  Inside the bomb shelter or out (whatever your bomb shelter is), be creative with it.  Life’s better that way.

Trusting in Dawn

My mind feels like a twisted pretzel.  I don’t have a clue who I am anymore.  I thought I was figuring out the puzzle, until April 1st, when the Social Security Administration notified me that I fit their definition of disabled.  In addition, they don’t anticipate my condition improving sufficiently to warrant a review until 2016. That was a kick in the gut.

I was completely stunned.  I didn’t think I’d be approved until the next level of appeal.  But SSA thought my case strong enough to make their decision after only one appeal.  Holy cow.

After all this time, all the adjustments I’ve made, all the work I’ve done to come to terms with my health issues, and all the writing I’ve done about it; I realize that I still haven’t acknowledged and accepted what’s happened to my life.  As I often say, “’De Nile is not just a river in Egypt.”

Reading the SSA letter, I wept with relief.  The unknowing, waiting, and sense of financial instability were gone.  At the same time, I felt really weird being excited that I’m considered “disabled.”  Me?  Disabled?  Really?  What does this mean?  Does it change who I think I am?

I’m still me.  I look healthier and younger than I have in a decade.  My issues can’t be seen from the outside.  It’s the insides that don’t work correctly.  No matter how hard I try, I can’t get them back to what they were.  This is the hugely painful part of the joyful news that I’m approved for Social Security Disability (SSDI).

I know that other people have successfully walked this path before me.  Eventually I’ll untangle the pretzel.  I’m still the same me I was before.  Except that I’m not.  My health issues were a catalyst for important growth and change.  If the slate were wiped clean of those aspects of my life, I’d regret losing them.  Other than my physical health, my life is healthier and more balanced than it’s been in a very long time.

Part of the problem is that I want it all:  the new parts of me that have come from living with my particular set of issues…and the good parts of my former life that I’ve lost.  I don’t want the stress, the exhaustion, the lack of spiritual balance, and the unhealthy lifestyle of those years…but can’t I have the good parts back and do away with the bad? 

I guess not. 

Lost in this conundrum of identity, I couldn’t find an authentic voice with which to write last week.  Committed to authenticity in my writing, this is my first blog post following SSA’s notification.

I don’t know how to respond when people ask what I do.  None of my answers feels satisfactory.  I’m no longer employed, but not retired, laid off, starting a family, or beginning a consulting business.  I don’t think of myself as a homemaker, although that’s primarily how I spend my days.  I’m on disability but have no outwardly visible health issues.  I’m still a minister, wife, and mother, but these roles have changed.

If asked what I’m excited about, however, I can respond easily.  I’m excited about learning to write for the eye and the internet.  I’m excited about learning new skills and exploring the world of technology.   I’m excited about one son’s upcoming wedding in June and the other’s pending fatherhood in the fall.  I’m excited about the time my husband I now have together.  I’m excited about trying new recipes, doing house projects, finding bargains, and reading more than just Bible commentaries. 

These are good aspects of my life that will eventually help me understand who I am at this time in my life and into the future.  But that hasn’t happened yet. 

I used to think I was a quick study.  Yet, six years after my heart diagnosis and 18 months after leaving my pastorate, I still haven’t figured out how to be the new person I need to be.  So much for being a quick learner!  I want to have gotten it all figured out by now. 

The Social Security Administration is correct, as much as I don’t want to admit it. I’m trying to use recent experiences to incorporate this into my consciousness.  For example, I attended two lovely bridal showers recently that exhausted me so much I cancelled all my plans surrounding them.  Last week, I left a Lenten study group halfway through the evening because a skunk had sprayed nearby and triggered my asthma.  If I’d been leading the group, or making a pre-funeral visit, my asthma would have been problematic. 

Darn.  After all this time and evidence, I still hope I’ll wake up in the morning and discover the last six years were just a dream. 

Wisdom says that isn’t going to happen, however.  So instead, I’ll be a new shoot sprouting from a seed.  The shoot is of the seed and wouldn’t exist without it, but looks quite different from the seed as the leaves stretch above the ground.

I will awaken from the dream I’m in, but my waking won’t negate what has happened to me.  It will be like the morning dawn that brings light to the world.  Dawn doesn’t change what exists.  It gradually illumines what is already present, makes the shadows flee, and nurtures life.  That’s the dawn for which I hope and in which I trust.

Thank You

After two months of ups and downs, I feel well enough to resume my blog.  I thought I’d be back on-line weeks ago, but obviously, I wasn’t.  I learned this week that people who take time away from blogs like mine post a note explaining why.  Live and learn, as the saying goes.  Please accept my gratitude for your concern about my health and your interest in my writing, and my apology for not posting a note to say that I was O.K.  When I’m off-line again, as will inevitably happen, I’ll let you know what’s going on.  I’m glad you care. 

Here’s the update:  My brief hospitalization in early January was probably due to my coming off steroids too quickly.  It threw my body into a tailspin.  These were medications commonly prescribed for people with asthma and breathing problems. My body’s reaction is fairly rare.  I may look like a typical woman, but evidently I’m not! 

So, I spent two months withdrawing from drugs that had improved my life and restored my breathing, but had caused dreadful and dangerous side effects.  Each time we dropped the dosage, my energy plummeted.  Basic household tasks were all I could manage.  My energy grew slowly as my body increased cortisol production.  Just when I felt better, it was time to reduce dosages and begin the process again.  Talk about a depressing scenario … I gritted my teeth and directed the fire in my eyes towards getting my life back, post-steroid.  I rarely had energy to check email or read the internet, initiate phone calls or visits with friends.  I lost my Facebook and LinkedIn passwords so many times that I haven’t visited those sites in weeks.  I put all my energy into doggedly making it through that darned withdrawal.

When I reached a plateau in late February, any new energy went into digging out of the paperwork that had piled up, and completing two tasks to which I’d committed.  I was so far inside the caves of Withdrawal Land that I didn’t realize how much you folks care and would want to know what was going on.  I feel truly humbled and touched by your presence in my life.

This week I’ve finally emerged into the sunshine.  The steroids are gone.  Paperwork is up-to-date.  Recent commitments were completed successfully.  My breathing is better than it’s been since May 2010.  If I had the stamina to party and dance all night in celebration, I’d do it instantly.  Instead, I’m thrilled to share this moment with you, my faithful readers.

Today I’ll request another set of passwords for Facebook and LinkedIn.  The next step is to record them in a notebook instead of on sticky notes. 

I’m lifting more weight at the gym and walking longer and faster on the treadmill.  I’m reading email and starting to reach out to friends again.  My dogs and I went for a 30-minute hike yesterday.  My stomach flutters as I remember how great it felt.

I’ll probably post on my blog once a week instead of twice. Twice a week was a pretty intense writing schedule for this time in my life.  Blogging once a week should give me more space for my learning curve, other writing projects, and the ebb and flow of my energy.

I’m glad you’re still here.  Thank you.