Thursday, February 18, 2021

 I had a virtual visit with my cardiologist yesterday.   It was a routine follow-up.  I wanted to talk about the reemergence of my elevated heart rate when I stand up (POTS) and this unbearable pain in my left calf.   

He, instead, decided to inform me that I had coronary artery disease.

Go ahead.  I dare you to try and scare me buddy.   You are not going to get a rise out of me just because they noted some plaque inside arteries on a CT scan THAT WAS MEANT TO EVALUATE MY PULMONARY FIBROSIS!

Move over, coronary disease.  You may think you are King, but you are the last in a loooooong line of concerns inside my body.  I know I usually try to remain upbeat, but I think it would be beneficial for this newest disease to be introduced to its extended family.  So here I go (mostly in order of arrival:)

  • Sjogren’s disease
  • Small fiber peripheral neuropathy
  • Rheumatoid arthritis
  • Lupus
  • Autoimmune pulmonary fibrosis
  • Autonomic neuropathy (including POTS, heat intolerance, chronic diarrhea and nausea, incorrect pupil dilation)
  • Immune deficiency syndrome
All of these serious diseases on top of the underlying conditions of depression, anxiety, and  fatigue similar to that seen in chronic fatigue syndrome.

And let me not forget the many pain syndromes I have dealt or are still dealing with:
  • Carpal tunnel syndrome
  • Thoracic outlet syndrome
  • Trigeminal  neuralgia 
  • Frozen shoulder
  • Sacroiliac joint inflammation
  • Some horrible yet-to-be-diagnosed tendinitis or sciatica in my leg
And how about ending up in the hospital with septic shock when a new medication wiped out all of my white blood cells in the matter of two weeks?   Or being the very rare patients who landed in the hospital with methemoglobanemia after taking a certain antibiotic.   Do you know what it is like to have physicians of all stripes say, “Oh, YOU’RE the one!”  And don’t forget that I got the added benefit of hemolytic anemia thrown on top of it just to further extend my recovery time.

I take 13 prescription medications per day, along with countless supplements and a monthly infusion of OTHER PEOPLE’S BLOOD PLASMA.

Welcome to the fold, Mr. Coronary Artery Disease.   I hope you like it here, because once you come in, you never go out.





Wednesday, February 17, 2021

What The Holy One Can Do with Dust

Segments of “Blessing the Dust” by Jan Richardson


All those days you felt like dust,

like dirt,

as if all you had to do was turn your face

toward the wind

and be scattered to the four corners

or swept away by the smallest breath--

as insubstantial--

did you not know what the Holy One can do with dust?


So let us be marked not for sorrow.

And let us be marked not for shame.

Let us be marked not for false humility

or for thinking that we are less than we are

but for claiming what God can do

within the dust,

within the dirt,

within the stuff of which the world is made

and the stars that blaze in our bones

and the galaxies that spiral

inside the smudge we bear. 


Ash Wednesday:  I remember this day, all those years ago, when I tirelessly worked on this day. Smudges on my thumb and forehead. Hundreds of foreheads touched and signed throughout the day. Touching. Smudging. Sneaking through bangs. Bending down to the smallest child. Saying all of the right words. Cringing whenever a fleck of those ashes landed on the bridge of someone’s nose.  


The past two years a priest has come to my home on this day to carefully smudge my head and lovingly put the oil of the sick on both my palms and forehead. This year of the pandemic. . . .no touching. . .no smudging .. .nothing. . .nada. . .dust. . .dirt


Read the poem again.  


I immediately recognized it as the perfect poem for the depressed. God has a particular way of humbling a person. God also has a way of challenging you to find him in the unconventional. Do I really believe in what God can do with the dust I have become?


I’m trying.



Thursday, January 7, 2021

Immune Deficiency Syndrome

So I have it.   Those words I used as the title of this post.

I still have not figured out how my body can have plenty of antibodies that mistakenly turn and destroy healthy cells within my body, but not enough of those very same antibodies to fight off real time infections.

Riddle me that, Batman.

Of course this official diagnosis has been several months in the making while in the middle of a world-wide pandemic - testing, retesting, one immunologist and then another.  An initial rejection by my insurance company and a final approval on appeal for IVG therapy.  I’m thankful for that.   

And, hey, I don’t get to determine the whacky conditions, diseases, and syndromes life throws my way, now do I?  My job is to accept them with grace; to open the door and welcome them to a life that is getting quite crowded with similar challenges.

Welcome aboard, my friends.