Saturday, August 4, 2018

A Deep Sigh of Relief


Hear that?  From both lungs.

Just in case anyone in the universe was out there waiting for the results of my pulmonologist’s appointment, it couldn’t have gone better.  (Except if there had been no reason to have been there at all. . . )

Long story short, although we are still waiting on the second readout of the CT scan by the Hopkins radiologists, my pulmonologist showed my scan to the colleagues in his office and they all agreed that they did not agree with the first radiologist’s report.


Yes, something like nodules are there.  Yes, there is more scaring at the base of my lungs.  And, yes, it has progressed.

So why am I sighing?

I’m not quite sure, but it was like being at the dentist’s office with her pointing to these little shadows on your X-ray and saying “Well, it could be a cavity, but maybe not.  We’ll just keep an eye on it and decide when you come back in six months.”   That was it.   I suppose we could call it, “watchful waiting.”   I don’t need any treatment now because that collective group of pulmonologists do not think it’s pulmonary fibrosis.  Now exactly how many cases of fibrosis or interstitial lung disease they have collectively seen from Sjögren’s or Scleroderma patients, I’m not exactly sure, but I’m taking it for now and can decide if I need to see a more specialized specialist in six months.

Six months.


That reminds me. . . I need to call my dentist because I am two months overdue for my four-month check up and there is a little shadow on an X-ray we were watching. . .

Thursday, July 26, 2018

So Far Removed

Crazy, it sounds.

I sit in a concierge lounge of a Marriott outside of the Baltimore airport. My husband is working nearby.  I tagged along on his business trip because I had an appointment with my physicians at Johns Hopkins yesterday.  I am not sure if you have ever experienced this type of environment, but I can tell you right now that there are no happy families vacationing outside of BWI.  The hotel is filled with people who sit here on phones or meeting over breakfast: discussing business deals and doings; points of contact; quarterly reports, accelerated lists.   Words swirl around me:  tangentially connected, strange-sounding acronyms like TDPF or POV.  Greek to me.

And here I sit - A Mom on Spin - artfully covering up my solitaire game. Spider solitaire, my all-time favorite.

Exactly how is it that I am so far removed from their chatter?  Non-engaged in anything that can even sound close to the things they discuss?  Should I pull out my eight morning medications?  Would that explain my tremor as I raise my morning cup of coffee?  My slowness in rising out of the chair?

How is it that I’ve become enveloped in being sick, ill, disabled?

Do my fellow breakfasters somehow feel they have a sense of meaning to their lives?  I kind of thought I did too.  Until I sat at breakfast.   How can my husband even stand coming home to my idle mutterings?  And how is it that the “life” of we sick people can be so cruel? Torturous?  Lonely?

Let’s discuss the CT scan of chest.  Of course the results arrived in my patient portal without benefit of speaking to a live individual.  As feared, there were findings galore, stirring my very-real fear of scleroderma into overdrive.  I then was yelled at by one superlatively caring family member (whose name will remain undisclosed) for acting like Dr. Google.  (Mrs. Dr. Google to you!) Empathy in mighty short supply as of late.  It’s clear that I can no longer discuss my fears and frustrations on that front. No call from the ordering pulmonologist the next day, so I brought the disc and report to my follow-up appointment at Hopkins.  Oh no, I’m not allowed to hand the disc to him, cause that brilliant nutty professors is aware of his shortcomings and admits he is bound to lose it.  Need to mail it to his trusty office staff once I return home to have it re-read by Hopkins radiology.  Never-the-less we attempt to develop a new treatment plan to institute if things with lungs are determined to be okay.  Nope, can’t go with that plan because I have already had a bowel preferation.  Other treatments?  This one gave me headaches, that one made my hair fall out.  Can’t take that one because somehow, somewhere, sometime I contracted Hep B.  (Shameless hussie that we all know I am.). And THAT one? Never again. Let us not forget the septic shock those little pills caused.

This morning I called mypulmonologist’s office to see what he thinks about these results in the meantime.  What do you mean super-efficient-phone-answer-er, he never discusses test results on the phone with patients?  You have to make an appointment for that.  And they were going to inform this patient of this little tidbit, WHEN?   Are you telling me that if they had, by chance, discovered a big fat tumor in my lung you would wait for me to call and schedule an appointment to discuss those results without ever informing me of the protocol in the first place?  What happened to the no-news-is-good-news-approach?

Sorry for the rant.  I’m so sorry for the rant.

But I need to admit that I’m feel a wee bit sorry for myself at this point.

I force myself to the hotel pool.  An attempted zen-feel about.  I give them ten points for that.  I am the only one in the entire pool area, for everyone else is upstairs making business deals.  Twenty points for that.  Zero gravity chairs that allow me to recline.  Now, if they only served Pinot Grigio. . . .

And then a trip to the hotel lobby for a chicken sandwich and a glass of the aforementioned beverage - for I am quite sure that whichever treatment is settled upon, it will be one devoid of alcoholic beverages and I’m determined to make up for it in the short term.

For, after all, I’ve earned it.

Wednesday, July 11, 2018

But I Did Everything Right!


I did everything right this morning.

Rose around 8:30 a.m., downed my first two morning medications, sat in the shade in my backyard sipping coffee, said my morning prayers, and then meditated with moist compresses on my eyes.  Why, I even stood guard and prevented the dog from pooping in the yard next door!

I returned back inside and - deciding against my usual carb-heavy breakfast - chose to eat fruit instead.  I then took my other six morning meds, started my essential oil diffuser, soaked in a tepid bath filled with epsom salts and essential oils with spa music playing, drank my low-salt-no-sugar-vitamin-and-electrolyte-water, and stood up.


Dizzy.  Nauseous.  Disgusted.

What happened to the benefits of being around trees?  The sheer goodness of summer nectarines and strawberries?  The detox of epsom salts?  The good karma connected with the dog poop?

All of it down the drain with the bath water.

Could it have been the second cup of coffee consumed while reveling in the fresh morning air?  The fact that my poor gastritis-ridden stomach cannot handle the ingestion of eight morning meds with just fruit?  Could it be that I truly need my morning bagel for medicinal purposes?

I well remember those days long ago; days when, after working long frantic hours, I would long for a day in bed.  Now I can't do enough to get out of it.

There's always tomorrow I suppose. . .