Tethered II

Today marks week #6 on the transplant list and my disease continues to progress. Everything slowly is getting more difficult, usually requiring more energy and breath than I can muster. As a result, I confine my bipedal forays almost exclusively to Pulmonary Rehab and the 6-minute walk I must endure at my bi-weekly clinic appointments.  Around the house, rather than hoofing from one room to the next, I rely on my trusty chariot — a zippy 3-wheeled scooter that miraculously squeezes into even the tightest alcoves and closets.

The scooter is truly a Godsend, affording me the kind of speed and agility I haven’t experienced for a very long time. It saves my breath for the really difficult maneuvers, like going to bed or getting a drink. But it also adds a whole new dimension of insanity to my ongoing issues with snarled cannula.  On my feet, it was no big deal to reverse direction and walk back around any obstacle my cannula encountered. Now, that same action often requires a deftly executed three-point turn, the occasional ding to cabinet or wall, a terrorized dog, and a bit of mild cursing.

Most annoying, however, is the constant battle between 50 feet of cannula and three spinning wheels. Toss in a persnickety “Y” connector that joins cannula to concentrators, and you have a disaster that plays out daily. Oxygen tubing is not cooperative. It does not lie flat or slide along in a nice orderly fashion out of its neat coil. It prefers to bunch and gather, especially around corners, ripping itself free of the Y connector on one end, or my face on the other.

But my cannula really shows its fickle ways while I am riding down halls, around furniture, and through rooms. It wraps itself around tires, knots up under the axle, or gets itself stuck in the tiny “anti-wheelie” wheels at the rear of the scooter. Often I will be jetting along down the straight-away (hall), only to have the cannula ripped from my face as it catches briefly under a wheel. I’ve tried coiling the cannula as I go, threading it through the arm rest to keep it free from spinning tires, and readjusting the tubing to keep it out of scooter range. But nothing is fail-proof.  I still hold out hope that some clever engineering student at MIT or Caltech will lay down their latest Robot Wars entry long enough to design a workable hose reel for oxygen tubing. They will be an instant Rock Star among gaspers everywhere!

Though cannula and scooter may not be the best-suited cohorts, together they provide a sense of freedom that I cling to everyday. Unlike Pulmonary Rehab where I can do 30 minutes on the treadmill (supported with 40 lpm of oxygen, constant monitoring, and a snail-like pace), taking three steps at home leaves me gasping. The scooter opens up the world (okay, the house) to me. With it, I’ve been able to enjoy a few sunny afternoons on the deck and get my own lunch — small but very important victories. If the call doesn’t come soon, I will likely finish out my waiting in the hospital. But for now, the scooter is helping to keep me firmly planted at home where I can ride to the end of my 50-ft. tether and view the landscape from a new perspective.


Simple Truths

ImageIn a few days I will celebrate another birthday, putting me solidly past the half-century mark. I share this only as evidence that I have lived long enough to learn a few simple, yet elegant truths.  Much of this knowledge was culled from the many wise people I’ve been blessed to meet in my time.  But most of it came from my own experience,  including bone-head mistakes, dumb-ass choices and failed actions taken in arrogance, naivete, stupidity, impatience, or some combination thereof. This is what I know:

  • Do what you love, and you will find a way to make a living from it.
  • When the way is blocked, there’s always another path.  You just might have to hunt through the weeds to find it.
  • Nothing is as soothing or joyful as holding a baby…unless the baby is screaming.
  • Sunrise makes everything feel better, especially after a long difficult night.
  • Remember to get your daily dose of Vitamin L — laughter. If you laugh at yourself, consider that a double dose.
  • When you point a finger in blame, three fingers point back at you.
  • A beautiful sunset is both a gift and a promise, no matter what your beliefs.
  • Do something that scares you every day.
  • Fruits and vegetables from your own garden always taste better.
  • Pay attention to your gut, heed that niggling voice in the back of your mind. Except if you’re schizophrenic, then you should consider going back on your meds.
  • Your are stronger than you think. Way stronger.
  • When you have trouble deciding between two choices, flip a coin. If you feel the need to flip it again, you already have your answer.
  • Your kids will always be your beautiful babies, no matter how old, big, hairy, smelly or angsty they become.
  • We are all Bozos on the Bus.
  • It’s very difficult to eat soup with shaky hands.
  • Tell people you love them, and tell them why. Then tell them again.
  • Be a great partner…with your family, friends, coworkers, doctors, educators, etc. We’re all in this together.
  • Courtesy and respect leave deeper impressions than fancy clothes and hefty pedigrees.
  • Losing weight is simple — burn more calories than you consume. But it isn’t easy.
  • In your lifetime, you will do many stupid, selfish and foolish things in the name of love. But you will do even more great and generous things.
  • It’s never too late to say you’re sorry, or to say thank you.
  • Every person you meet — friend, friendly, foe or in between — has something to teach you.
  • Tequila shots almost always lead to bad hang-overs…and pregnancy.
  • Big dreams require thoughtful plans.
  • Everything happens for a reason. The challenge is to figure out why and become a better person because of it.
  • Texting is a lousy way to hold a conversation.
  • It’s impossible not to laugh along with a baby.
  • It all starts with the Golden Rule.
  • Even though they act like they aren’t, your kids really do listen to you.
  • The friends who are there for you when it really counts are often not the people you expected.
  • When in doubt, Stop. Breathe. Listen.

What are your Simple Truths?

It’s (Not) All About Me

not_meChronic illness has a way of redefining who you are if you aren’t very careful.  It engulfs every waking moment:  medicine schedules, treatments, therapies, doctors appointments, research, dealing with symptoms, support groups, thoughts, prayers …. you get the idea.  It’s a full-time job. And for awhile there, I fooled myself into thinking it was my full time job, and mine only.  But I was wrong. Very wrong.

As my disease has progressed, I’ve watched my family become “sick-centric”.  My illness worms its way into decisions as mundane as who will drop off my daughter at the library, to bigger things, like where (and if) we go on vacation this year. Too often, family activities are dictated by whether I’m having a good day or a bad day.  And, since most household chores leave me gasping for breath, my husband has taken over all the shopping as well as most of the housework — in addition to all of the yard work.  I see the strain on his face and it tears me up inside. Like so many people I’ve met with PF, the guilt can be overwhelming at times.

Yet, even though our activities have changed drastically, I still clung to the hope that my kids were relatively unscathed by all of this.  We’ve talked about my illness, and I’ve told them I’m always here if they have questions or want to talk.  Since both have remained fairly mute on the subject, I figured they each viewed all of this as just a bump in the road.  Again I was wrong.  So very wrong.

My daughter had to write about a personal experience for an English assignment.  She chose to write about when we learned of my diagnosis.  We sat in my bedroom, talking about that day.  She distinctly remembered  a frigid winter landscape, bare trees, gray skies and icy streams.  I was diagnosed in early fall — September.  The trees were still green, the sun bright in the sky and the temperature was almost balmy.  She became very upset, convinced I was wrong, so I told her to write it the way she remembered.  When I read the finished essay, I realized why she was so adamant about the weather.  Her memory of a bleak winter day was so vivid because that’s exactly how she felt.

The piece was beautifully written, and brutally honest.  And in it, I discovered that the news that day crushed my daughter’s innocence.  The mother who was supposed to always be there, no matter how much teen angst she tossed my way, was suddenly fragile and broken. She could no longer be certain when or if I’d be there. I’ve sobbed over that essay, especially as I see the same theme pop up in other projects and assignments.

My son, who is pre-law at Saint Louis University, has been deeply affected by my disease in his own way.  He’s a born debater, and unlike most kids his age, he uses his Facebook updates for serious discussion of issues that concern him most.  During the Presidential election, he posted a plea asking people to stop their political mud slinging for just a moment and take a wholly humanitarian view of “Obamacare”.  He used me as an example of the importance of universal health care.  My PF bretheren and I are uninsurable.  In my case, I’m looking at four years before I will have insurance to cover a lung transplant.  Since ability to pay is a prerequisite for getting on the “the list”, I risk the very real possibility that I may never make the list, or be dropped from it when I am most in need.  It happens, I’ve seen it.  And my son worries about that.  While I’m proud of his understanding and vision, I also know that he’s just 18.  Right now he should be focused on his studies, his girlfriend and hanging out with friends.

It’s not all about me.  And yet it is.  My disease is indiscriminate. Though it attacks my lungs, it devastates the whole family.  I can only hope (and pray) that whatever I learn/understand/accomplish through this illness, will be shared by the people I love most.

So Long, Farewell, Auf Wiedersehen, Adieu

goodbyeAt the stroke of midnight on New Year’s Eve, as the world greeted 2013, I closed the book on a huge chapter in my life.  As of January 1, I officially joined the ranks of the disabled.  The transition was more symbolic than anything, since I have actually been on medical leave since June.  Even so, I found myself swallowing hard at the finality of it.

The decision to leave the work force was not easy for me.  I’ve always worked. Though I was a stay-at-home mom when my kids were young, I still clocked 30 – 40 hours a week (sometimes more) as a freelancer. The thought of not working was anathema to me. In fact, until just a few weeks ago, I was convinced I would return to my job once I’d fully recovered from my bouts of pneumonia last spring. But each time I drew close to reaching the “magic number” (10 mg prednisone), I had a flare.  After a few long discussions with my doctor and a sobering look at how my disease has affected my daily life, I realized that returning to work was impossible. The constant threat of infection is a danger I can’t afford. And, how can I expect my co-workers to keep picking up the pieces for me when a sudden flare lays me out for weeks at a time?

When I entered the hospital in early December with my third case of pneumonia in just nine months, I knew I’d made the only decision I could.  Thankfully, I had purchased Long Term Disability insurance through my employer.  If you have the opportunity to buy LTD, do it NOW.  Someone gave me this advice at the beginning of my career and I am so thankful I listened.  This is our family income for now.  Every penny spent over the years was worth it.

I also immediately applied for SSDI (Social Security Disability Insurance).  My main purpose for wanting SSDI is the Medicare option.  After two years of SSDI benefits, you are automatically eligible for Medicare. Unfortunately, you have to be on Medicare an additional two years before it will pay for a transplant. That’s four years total before Medicare will cover a lung transplant. So, it was important to me to apply and get accepted as quickly as possible.

While researching the application process, though, I read that some 70% of SSDI applications are turned down the first time. Thankfully, there is something called the Compassionate Allowances List.  The CAL is a list of 165 medical conditions that are considered so severe, they are sure to qualify for disability benefits.  Applicants who have CAL conditions are fast-tracked and benefits are decided upon within a matter of days rather than months (or even years). IPF is on the list, and I received my approval three weeks after I’d submitted my application online. Finally… IPF is good for something!

Now that my benefits are in place (and the Medicare clock has started its slow count-down), I am faced with what to do with myself.  I’ve been gobbling up books by the dozen. My husband and I have started hunting down healthier recipes to help my ongoing weight-loss effort.  And I am even eyeing my knitting basket with its snarl of remnant yarn, trying to come up with something fun and creative.  But in the end, this is all just idleness.  What can I do that will make a difference for someone? What can I explore that will teach me something new?  I’m still figuring that out and I’m wide open to suggestions.

In the meantime, here are a few helpful links if you are looking into applying for SSDI:

Social Security Disability Page   The application is two parts: the benefit application itself and the Adult Disability Report. The report is where you will list your doctors, medications, tests, hospital stays, etc. Download the checklist first and gather up all of your info before you start. It will make it much easier (and faster) to complete the report online.  Remember to use the “Remarks” box at the end of the report to paint a picture of what your life is like because of your condition.

SSDI and COBRA Extension   When you are approved for SSDI benefits, you may be able to extend your COBRA coverage an additional 11 months (for a total of 29 months). This article explains it all.

Why You Want SSDI   This is another “lawyer” site, but it does give a great summary of the benefits of receiving SSDI.



I use supplemental oxygen 24/7.  That means wherever I go, I have a cannula strapped to my face and a plastic tube connected to my oxygen source.  When I’m on the go, I use a short tube attached to a portable oxygen tank. But at home, I have a 100 ft. “umbilical” that snakes between me and my oxygen concentrator.

My oxygen supplier frequently warns me I shouldn’t use anything longer than 50 ft. because the longer the tube, the lower the O2 flow.  But with my 100-foot tube, I’m free to roam just about anywhere in my house. So, I’ve worked out a compromise — for bed, I plug in with a 25 ft. tube and save the ultra long cannula for daytime.  Convenience has its price, though.  Like when I get myself all wound around the island in the kitchen.  Did I go right or left?  I can’t tell you how many times I’ve gone to the kitchen for something and started back out, only to have my head snapped around as the cannula pulls tight. The kids still smile when they see me backtrack and do a reverse circuit.

Feet pose another obstacle.  It’s not tripping (for me at least) so much as it is standing, as in, “please move, you’re standing on my cannula.”  Standing on my tubing doesn’t hinder the oxygen flow, but it does stop me in my tracks. I thought when I switched to a green high-flow cannula, this little annoyance would be rectified. To my surprise, the family tromps even more on the highly visible green tubing.  My guess (hope) is that they’ve grown so used to my O2 set-up, they don’t really notice the cannula anymore.  Or it may be self-defense on their part.  Whenever my cannula goes taut, I give it a yank, figuring it’s just caught around a corner.  Recently, I’ve been hearing squeals when I tug on my tubing. Seems I’ve been tripping up the kids a lot more than I realized!

Then there are the frequent snarls. Everyone has grown used to me standing in the hall outside my bedroom and growling as I work through another knot. My tubing gets caught on drawer pulls, chair legs and just about anything left on the floor. The dog, of course, takes it all in stride.  He’s become quite adept at disentangling himself whenever my cannula slides by.  And I usually manage to stay fairly unencumbered myself…except for that time I twisted one too many times while making the bed and did a face plant into a pile of pillows. Yes…there were witnesses. We all burst out laughing.

I’ve often thought a portable tube reel (kinda like those retractable dog leashes) would solve a lot of my problems. Unfortunately, nothing like that exists and I am no engineer. Of course, the real answer is “tubeless” oxygen, like wireless Internet.  Oh wait, that’s called “normal breathing”.

In the meantime, while I still have these lungs, I’ll be tethered.  But being tethered isn’t so bad.  The limits of my cannula have forced me to slow down and refocus. I spend a lot of time talking and hanging out with my kids — unhurried and undistracted.  And I’m closer to my brothers than ever.  It’s amazing what happens when you stop thinking about where you should be and concentrate on where you are.

I’ve heard lots of people say they are “grateful” to their disease for waking them up to what’s important in life.  I’m not grateful to IPF — it sucks big time.  But it is part of my life,  a big honking bump in the road. And like all the other bumps, twists and turns I’ve encountered, I’m trying to learn as much as I can from the experience.  So far I’ve discovered that I am surrounded by amazing people eager to help — I just didn’t notice until I slowed down and let them in.  And I’ve realized that if you get stuck heading down one path, you can always backtrack, unwind yourself and try another route.

Photo courtesy of 123rf

Future Tense

  Attitude is everything when you’re fighting for your life. In the 11 months since I was diagnosed, I’ve worked hard to stay positive. Usually that includes finding something to laugh about every day and focusing on the here-and-now.  After all, I can do absolutely nothing about the past, and the future is a crap shoot right now.  So, I guess I shouldn’t be surprised that it was an innocent discussion about the future that caught me up hard and slammed me to my knees. But when it happened, I was wholly unprepared for the emotional gut punch that sent me reeling for weeks.

My husband and I were sitting with our financial planner,  shuffling numbers around to ensure we’d be able to pay for my son’s impending college career.  Periodically we go through our plan to make sure we have all of our needs covered. (All I can say is Thank God we bought that extra life insurance on me 5 years ago…)  Anyway, the planner asked if we were still planning to work to age 65.  That simple question set off klaxons in my head.

Sixty-five?  That’s 14 years away. Will I be able to work til then? Will I even be here then?  Suddenly I was looking full face into my very uncertain future.  I’d glimpsed that monster several times during the previous months, but I was always careful to view it from the periphery — never straight on.  Now, in the full glare of consciousness, the realization that my time here may be quite short hit full force.  It’s one thing to babble about living in the moment, it’s another to actually accept that the moment may be all you have.

When we hit the car, I told my husband about my epiphany.  He waved me off and told me I can’t let myself dwell on the negative.  He was right, but I was now in the grip of the monster… and I couldn’t look away.  A few weeks later, I was in the hospital with my first bout of pneumonia.  My body didn’t feel right… my recovery was slow and the reality of my disease kept glaring at me.

I tried talking about the monster with a few others, but I quickly realized it was even more terrifying for them.  Right now my family and friends are taking their cues from me. If I’m freaked out about my “future”, well….  So I turned to the only other group I could think of, the PF community on Facebook.  As always, they came through for me.  But what I found most interesting was how few of them really thought about the future.  They are a group that truly lives in the moment.  The gist of their advice was to make my plans — sign an advance directive, factor mounting medical expenses into our financial plan — and then focus on enjoying what I can while I can.

It’s good, sound advice.  But as I head into the third month of my medical leave, and approach the one-year anniversary of my diagnosis, I find myself mired in thoughts of what’s to come.  A year ago, I could sit without supplemental oxygen and needed just 3 LPM when I was up moving around.  I didn’t use it at all at work, other than walking to and from the parking lot.  Now, I use twice that amount sitting, and pump my Os to 8-10 LPM moving around. I’ve been in the hospital twice in the past 6 months.  Making dinner leaves me feeling achy and breathless.  What’s next?

Recently I read a book called The Long Goodbye by Meghan O’Rourke, a memoir about a woman who lost her mother to cancer.  I read it from the dual perspective of a daughter worried about losing my own mother, and a mother worried about not having enough time to give my children all they deserve before I depart.  At first I thought about keeping journal for them… but then I realized that’s a ridiculous idea.  My kids are teens — they need me, not stilted words of wisdom to refer to once I’m gone.  So, I am concentrating on being as present for them as I can during the moments we spend together.  That’s what they’ll keep with them anyway — they’ll remember the times we rolled around on the floor together, laughing uproariously at a stupid joke no one else thought was funny.  They’ll remember the feel of the pillow on their cheek, the warmth of my hand on their back as we lay talking about what happened that day.  They’ll remember how deeply they are loved and how completely they are cherished, because that’s what I remember when I think of my mom.  Life is in the moments, and those moments are more precious that ever.

And so after reading books, sifting through comments and listening to advice from a range of sources, I realize my kids are my “future”.  My love fills their hearts, my quirky sense of humor inhabits their smiles, my courage strengthens their resolve to face each day.  I don’t know how much time I have, but I do know the only way to make it count for something is to make it count for them.

TIP:  Supplemental oxygen can be really hard on the mucous membranes of the nose and sinuses.  I’ve discovered that Ayr nasal saline gel really helps. Apply it with a Q-tip to the inside of your nose to help keep things moisturized and avoid nose bleeds.  Ayr nasal mist helps relieve sinus headaches brought on by oxygen use as well.


WYSIWYG (What You See Is What You Get)

   When I began my writing career in the early ’80s, personal computers were just starting to enter the workplace. They were so slow, I’d switch on the box then head down to get my coffee.  When I returned 10 minutes later, if I was lucky, the cursor was blinking lazily at the DOS prompt.

Why do I mention such ancient knowledge?  Because it puts the idea of WYSIWYG into context for you younglings.  As a writer, WYSIWYG (what you see is what you get) was just this side of a miracle.  Before WYSIWYG programs like WordPerfect, we had to imbed code into our text to apply formatting, such as underlines, bold, superscript, etc.  It was like writing in HTML all the time.  You had no idea what your text looked like until you printed it out.  We killed a LOT of trees back then just trying to get titles centered!

Anyway, during the nine months that have passed since I was diagnosed with pulmonary fibrosis, I’ve thought a lot about WYSIWYG and how it applies to life in general.  As things have gotten more difficult or time-consuming for me, I started to realize how much energy I was wasting just  to “keep up appearances”.   I worried about whether my coworkers considered me relevant.  I fretted about keeping my gray roots colored.  I kept up “friendships” with people who continually sucked the energy right out of me.  I allowed myself to be cut off and boxed in just to keep the peace.  Sound familiar?

It’s taken me awhile, but I realize I don’t have time for that kind of crap anymore.  I have a focus … a mission.  And if I’m going to succeed, I need every ounce of energy I can muster.  So, I am going WYSIWYG.  And what, you ask, does that look like?

  • My hair is a lovely shade of silver gray now.  I keep it short and spikey — sassy like the real me.  And people mistake me for much older than I am.  But I feel a lot better than I ever did when I stressed out about trying to “hide” my gray roots.
  • I’ve let my “friendsucks” go by the wayside.  I’m pleasant and gracious, but I don’t seek them out or engage them.  And you know what?  They don’t even notice I’m missing.
  • At work, I don’t worry about how I am perceived.  I know I have as much to teach my younger coworkers as they have to teach me — maybe even a little more.  I’ve been through the wars, I’ve seen battles won and lost.  And I understand human nature with an intimacy that only comes from living 50 years.  Don’t count me out, kids!
  • That box?  It’s busted.  I speak my mind.  I push back.  I make a ruckus when it’s called for — while the welcome mat is always out, the doormat is gone.
  • I am grateful, everyday.  It’s amazing what a difference it makes to start the day with a sense of gratitude — it permeates everything, and it makes the setbacks much easier to accept.  It’s all part of the long, bumpy, winding road that is now my life’s journey.

WYSIWYG is my term.  There are much cooler names for it now… living your truth (LYT), being transparent, keeping it real…that kind of stuff.  But it all really comes down to dropping the bullshit and just being who you are.  Have you gone WYSIWYG in your life?  What have you learned?  I shared my story — I’d love to hear yours.