A Little Dab Will Do Ya

  I had my post-hospital follow-up visit with my pulmonologist today.  The adventure started with a CT scan to see how well my lungs were healing from my most recent bout of pneumonia… and it ended with me learning how to give myself a shot in the belly.  Needless to say, it was an interesting afternoon.

The CT scan showed a slight improvement in the patches of “ground glass” — hazy areas that indicate lingering inflammation in my lungs.  But, after two weeks of IV antibiotics and ongoing prednisone, the Doc wasn’t pleased with the speed of my progress.  So, he’s decided to add a short course of Imuran to my daily 40 mg dose of prednisone in hopes of speeding this thing along.

Imuran is used to prevent transplant rejection, as well as to treat rheumatoid arthritis.  In short, we’ve added one immunosuppressant on top of another.  I am now, as one PF group member on Facebook put it, a germ magnet.  Hand sanitizer — which we lovingly call “goop” in my family — is my new best friend.  I’ve always carried it with me.  Now I carry multiple bottles just in case.

When I was diagnosed with pulmonary fibrosis last fall, my Doc told me infection was my Achilles heal.  A simple cold for someone else could land me in the me in the hospital. I developed a healthy fear of being sneezed on, coughed at or unknowingly slimed in any number of ways.  I gelled shopping carts, telephones, computer keyboards and the steering wheel of my car.  I bleached the sponge in the breakroom at work.  I washed my hands until they chapped and liberally applied goop before meals and after shaking hands.  And still… two cases of pneumonia and two hospital stays.  What’s a germ magnet to do?

I guess the only thing I can do is stick to the plan …. ERSRGOMAAM  (eat right, sleep right, get off my ass and move)… and goop!  Lots and lots of goop!

But what about that belly shot thing?  That has nothing to do with my PF… at least not directly.  That little party is all thanks to my erstwhile picc line.  The high dose aspirin (650 mg, 3x a day) wasn’t  doing anything to bust the clot. In fact, my left arm is even more swollen and is now tender on the inside of my elbow.  We’ve switched to twice daily injections of the blood thinner Lovenox.  I’m supposed to shoot myself around my belly button, and each injection leaves a little bruise.  I’m looking at five days of this  (10 injections), so I’m thinking about “tatooing” an “S” around my navel.  Or maybe a smiley face.  Hmmmm…. this could be fun!  Any other ideas?



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.

Home Again, Home Again, Jiggity Jig


At last I’m home, after a week’s stay in the hospital with pneumonia.  This was my second bout of pneumonia and my second one-week stay in a little over two months.  I sincerely hope this isn’t a new pattern!  But it does show that I’m getting pretty good at reading my body;  Of course, sitting around gasping while using double my normal level of oxygen was a pretty good sign something was wrong.

My first hospital stay was the week after Easter.  Tests showed PCP (Pneumocystis carinii pneumonia). It’s an opportunistic fungal infection common in patients with HIV (and pulmonary fibrosis).  Anyway, I’m now on a prophylactic dose of the antibiotic dapsone forever.  The most recent infection wasn’t PCP (thankfully).  In fact, we don’t know what caused the flare.  After re-running all of the autoimmune tests and dozens of cultures, the docs couldn’t find the culprit.  But high-dose steroids and a handful of antibiotics seemed to do the trick.

I actually came home with a picc line — a special IV placed in the upper arm with a long catheter that runs through the vein to the heart. I was getting once-daily IV infusions of antibiotics at home.  But yesterday I woke up to find my right arm (the one with the picc) swollen and tender.  The doc told me to come in today so he could look at it.  By the time I got there this afternoon,. my right arm was half-again the size of my left.  The doc pulled the picc and started me on 2 aspirin 3 times a day to bust the clot that had formed in my arm.  He thinks we caught it early enough that we can get rid of it without more aggressive therapy.  Keep your fingers crossed.


picc line

Needless to say, the IV infusions have stopped (yay).  I’m still on an elevated dose of prednisone, which leaves me vulnerable to infection, so I’m being extra careful, trying to avoid crowds and slathering on the Purell at every turn.  I see my pulmo this Friday to find out when I can go back to work.  Soon, I hope — I’m getting b.o.r.e.d!

If nothing else, this latest flare made it crystal clear I can’t take my routine for granted.  During the previous few weeks, I wasn’t diligent about doing 4 nebulizers a day, and there were nights I went to bed without doing my inhaler.  I realize now I have to stay on top of it 100% of the time, because I have no excess capacity to play with (total lung capacity is 49%).  I’m either rock-solid stable, or I’m not.  There’s no “sort of” for me.  I’m going to have to fight hard to keep what I have left — and that means getting my ample ass back to pulmonary rehab on a regular basis.

I’ve missed all of you, and I’m sorry it’s been so long since I posted.  I’ve been wrestling demons as I come to terms with my present and my future.  I think I’m finally ready to start writing about it all, so look out for a flurry of random thoughts coming your way soon!