Thursday, October 2, 2014

Pain, pain go away...

It hurts. I hurt. Where? Everywhere and anywhere. It's in my back, my arms, legs, neck, stomach, head and, even, my butt. I'm whining about Lupus, fibromyalgia, osteporosis, gastroparesis, arthritis, my worsening eyesight and the cold weather that's starting to settle into my bones in New York.

I'm making the doctor rounds, as ordered, and some medications are being removed, others added, dosages changed and tests ordered. *Sigh.* It's a job and it's a frustrating one at that.

Talking to a friend last evening who also has autoimmune disease plus work plus family plus daily life challenges like talking to any darn insurance company (auto, home, health - pick one) or staying on hold for tech support or grocery shopping or actually getting WORK done, I found myself giving her advice that I need to give myself again.

Pick three things. That is, choose - in priority order - what things you are going to master today, this week, this month. For example, I suggested:

  1. Health/Self-Care. She's presently in a 'flare' and it's gotten worse due to a huge personal disappointment. Because she was so upset yesterday she canceled her rheumatologist appointment and she needed to address her mental health as well. No good. Health comes first. Reschedule that appointment and talk to a mental health provider. 
  2. Family. She has a son who needs to know she's available no matter what shape she's in. I learned that lesson the hard way by getting too wrapped up in my own grief over my brother's suicide this past year that I neglected my kids and one acted out when he felt it was finally safe to do so. 
  3. Paid Work. As an advocate for others, like myself, she is always helping people for free but neglects work for which she can be paid. 
And because neither of us can stop it, I added a fourth which is our passion: Advocacy.

My friend champions the causes of those who are trampled on in Family Courts across the United States, mostly parents who lose their children under ridiculous rulings by the departments of child welfare. She does an amazing job. I am trained as a Court Appointed Special Advocate (CASA) for children in foster care and I have become involved in suicide awareness and prevention due to my brother's death last year. I've put the CASA work on hold because that would be my number five. That's too much.

I told her we're good enough as we are; doing what we can, when we can but taking care of ourselves comes first ... and praying doesn't hurt either. I hope she takes my advice. I'm trying to take it, too, because I overextend, over promise, overdo.

Chronic illness should not manage us. We must take back the reins and keep reminding ourselves that it's simply okay to just be.
Picture credit:

Wednesday, September 17, 2014

Crohn's Disease ... No laughing matter

Yes, I am related to Dr. Burrill B. Crohn. My grandfather, Myron, was his younger brother. This fantastic article was just published about the discovery of regional ileitis and how my brother, Steve Crohn, also contributed to far-reaching medical science leading to a cure for HIV.

I hope you find it interesting and educational.

The Pharmacologist - September 2014

Article begins on page 132.

Monday, September 15, 2014

Life takes its time...

Last time I wrote, I expounded on what it feels like to turn 54-years-old after never thinking that I would even live this long due to cancer, lupus and chronic illness. None of my doctors gave me any encouragement. But life takes its own time and I'm glad.

Today I celebrate my marriage of 30 years to the same man - yes, the same man! I know that is uncommon but I think it might have something to do with commitment and honor and love and - to tell the truth - neither of us ever had anywhere to go when we threatened to leave!

Albert Einstein said: "The only reason for time is so that everything doesn't happen at once."

Ain't it the truth. As I scroll through my memories, I could never have been able to understand them or learn from them if everything ended up in a jumbled pile of contorted stuff. That's why we process things as they come to us. That's why I'm not a big picture taker; I want to take in what I am experiencing, seeing, doing without worrying if I get the shot.

Yesterday was a great day for memories. A family day when my husband, two sons and I went to New York City to see STOMP off Broadway, walked from the theater to Little Italy and the Feast of San Gennaro and wound our way through masses of people, cutting through Chinatown, to get to an Italian restaurant my Italian husband remembered, the original Puglias. Not only did we eat delicious food and toast my son's 21st birthday, there was singing and clapping and waving of napkins and standing on chairs. Ahhhh life! It happens in moments.

Today I get to think of all those moments because I'm tired; oh so very tired. My disabilities render me physically useless the day after such a moment. This is when life takes its time and I get to remember yesterday and all the days, months, and years before.

The only thing we forgot to do was take a family picture! Rats. 

Mulberry Street, NYC

Friday, September 5, 2014


Hi, all. Please join me locally or visit SISFI for a full schedule of radio shows, workshops and other events taking place September 17th to October 3rd.  Suicide affects each and every one of us whether someone close to us completes suicide or we know others who have been impacted or even mentioned it aloud. This is especially timely due to the loss of comedian Robin Williams and, more personally for me, my brother, Steve Crohn. Thank you to Ossining Public Library and Ossining Communities That Care for making this happen in my hometown.