Tuesday, May 5, 2020

Staying Positive During Quarantine

Like a lot of people with chronic illness, this quarantine is not my first rodeo.
I've been "grounded" before by severe bouts with chronic illness (systemic lupus, along with lupus nephritis, Sjogren's and Raynaud's).
Twice, it was severe enough to leave me completely bed-ridden for months.
I know a little about How to Quarantine.

Being cooped up doesn't have to be an endless sea of nothingness and depression.
We still have creativity and humor to keep our spirits up. And both of these traits nurture resilience. I believe that is in part because being creative gives us something to focus on besides everything that's not going well. And it can provide an outlet for emotion and self-expression, and even a sense of control.

In 2002, I was in the hospital with my kidneys failing, congestive heart failure, pleurisy, neuropathy- the lupus was raging out of control. They put me on 9 drugs and chemo to get it under control and I was getting really depressed from the chronic pain as well as being in the hospital and feeling defeated by lupus (again).

Then Saralyn, my silliest friend, came to visit me. She treated me just like things were normal, instead of awkwardly standing there not knowing what to say. She jumped from goofy topic to goofy topic until she got me to laugh. About maxi pads. And how annoying they are. It changed everything.

I stayed up late jotting ideas on scraps of paper, writing a really dumb song about how I hate maxi pads and how I can never find a normal box of pads- just weird ones. I was completely distracted from my pain and from the fact that I was in the hospital with 99 problems. The act of creation was an act of me reclaiming my sense of humor and a sense of control.

Now, that maxi pad song is not one that I share with the world, but it opened the floodgates. I spent hours every day for the next year, even as I was regaining my strength, writing about all the things that frustrated me (had plenty to pick from!) and I ended up writing an entire CD of humorous songs about surviving chronic illness. That CD went on to be played by a lot of radio stations and reaching a lot of other chronically ill patients. I got to pay it forward with the laughter. I took the gift Saralyn gave me and passed it on to my fellow patients.

And here we all are together, faced with a global challenge this time.
And I've been writing again. About wearing sweatpants, about trying to use Zoom, about cutting my husband's hair.

You don't need to be a professional to pick up a pen or create.
I encourage everyone to write, even if it's just for yourself. Or make something. Or find some "dad jokes" and get up and tell them to your family. Express yourself! Sometimes the best way to cheer yourself is to cheer someone else.

Monday, August 26, 2019

How to Make a really cheap air conditioner- beat the heat

Hey there friends with autoimmune diseases and other maladies that are made worse by exposure to heat! There's no need to just suffer and get worse because you can't afford an air conditioner, or your landlord/ Homeowners' Association won't let you put one in your bedroom window. You can beat the heat!

I found this article on wikihow. I've seen other similar articles using a cooler with water bottles with the fan put inside (the cooler had to have cutouts. This is a lot simpler).

Check it out and let me know if you try this!


Friday, July 12, 2019

Great Cure for Poison Ivy, Poison Oak, Poison Sumac

Poison Ivy!
It's the season.

I don't know about you, but when I get poison ivy reaction, I get A POISON IVY REACTION!
Last time I had poison ivy, it went systemic. Anywhere I had skin was now a rash, some of it oozing. I was in a ridiculous cycle: itching like mad, take Benadryl, fall asleep, wake up itching, repeat.

It was in the middle of this antihistamine-induced stupor that I did a phone interview with a reporter about my music and I wound up talking to the guy for like 5 hours and telling him way too much about my personal life. The only thing I remember from the conversation was that 1) I told him way too much info and 2) as we were hanging up, I said "well, I told you way too much. I have to kill you now.:" (That later became a song I wrote, "I Have to Kill You Now").

I was stubbornly resisting prednisone because, although I knew it would bring me relief, I also know from experience that it causes me insomnia, weight gain and mood swings, and it also doesn't get to the root of the problem; it gets your body to stop reacting to the poison, but it doesn't help you clear the poison.

Now, please note I am not a doctor and these are just the personal choices I make when weighing pros and cons. YOU CAN DIE FROM AN ALLERGIC REACTION.

I went to the pharmacy and they took one look at me and told me to go to the emergency room.
I said no, dammit, I am not going on prednisone! There has to be another way.

So they pointed me to the homeopathic remedies, and I ended up taking Rhus Toxidendron, which is a kind fo "hair of the dog." Very tiny amounts of the toxin somehow help the body to clear it. That's the theory. (This is not the "cure' for poison ivy I am talking about- I'm getting to that!).

It took me about a month to totally get rid of the rash from the poison ivy.
I had a gig during that time. It was one of those "in the round" shows where there are 3-4 songwriters on the stage, taking turns playing songs. and I looked so awful, no one would sit next to me. In retrospect I probably should've canceled and let them go on without me, but this is me- the same person who 4 years later would have a stroke on the way to a gig then still get up and try to perform.
But that's another topic. The point of my telling you this part of the story is: poison ivy is NOT contagious.

Poison ivy is spread by the *oils* from the leaves, so if you get that oil on your clothes or garden tools or even your dog or cat, you can *keep getting poison ivy* over and over! Anything that has been in contact with poison ivy must be completely cleaned off. So, poison ivy *can* be spread, but only by contact with the oils. (You know what is highly contagious and just as annoying? Pinkeye! But I digress).

This brings me to the promising *cure* for poison ivy I recently learned about:
a cleanser that removes the oil from poison ivy/ sumac/ oak away from your clothes, tools, skin, etc.
It's called Tecnu.

Tec Labs Tecnu Original Poison Oak & Ivy Outdoor Skin Cleanser https://www.amazon.com/dp/B000A7S3WK/ref=cm_sw_r_tw_dp_U_x_z5jkDbKFGDDZK

You rub it on, wait a few minutes then wash it off, and now the oils are removed. You've gotten to the root of the problem rather than just squashing your body's reaction to it. And as far as I know, no nasty side effects and no constantly falling asleep from antihistamines. No oatmeal baths or steroids. No waiting a month for relief. And hopefully no sitting on a stage with 3 other people with empty chairs on either side of you because you look like one of those "please send money to help this poor afflicted person" commercials.

Of course, an ounce of prevention is worth a pound of cure, so if you can just avoid poison ivy/ oak/ sumac altogether, that'd be ideal. But 'tis the season for outdoor fun and you can't spend your whole life hiding indoors (well, I guess you can, but even if you do, other people go outside and can bring the poison oils with them on their clothes/ pets/ tools).

Wishing you an itch-free summer!

*P.S. NEVER burn poison ivy; the smoke can carry the poison into your lungs and kill you! (Thanks, Tom Reed for that reminder!)

Monday, January 7, 2019

Book review: Anatomy of an Illness by Norman Cousins

This may seem a little odd, but I'm reviewing a book that came out in 1979.
And I've read it before, in 1994.

Why would a I review a book I read 25 years ago, and one that is 40 years old?
Because it's a great book, it's still relevant and my memory is so sketchy that any book I read a second time may as well be new to me. I remembered just enough about the book to know I needed and wanted to read it again.

A little backstory on how I found this book in the first place, then on to my review.
In 1993, I was diagnosed with lupus (SLE). I had a pretty severe bout with it, involving kidney failure, anemia, exhaustion, joint pain, hair loss, trouble eating/ digesting. At one point, I wasn't sure I was going to live.

Once I got on the prednisone and realized I was going to survive, I got my fight back, and I wanted my quality of life back. I wanted better choices than strong doses of steroids, with their nasty and serious side effects. Most likely while writing in my morning journal, or when out for a walk, I had a flash of intuition telling me to look into mind-body connection. And so I went to the library and searched under that term (remember, there was no internet in 1994).

The 2 books I found in my local library were this one, Anatomy of an Illness by Norman Cousins, and Love, Medicine and Miracles, by Bernie Seigel (I intend to reread and review that book here as well). Both great books, both eye-opening and mind-bending, both very much worth reading.

And now, on to my review.

Anatomy of an Illness  by Norman Cousins

This book came about as a result of the author's experience with a life-threatening illness.
He was diagnosed with ankylosing spondylitis (Bechterew's disease) and given a one in 500 chance of survival.

These dismal odds set him on the path of being proactive about his health. Being in constant agony, he could not sleep. And if you can't sleep, you can't heal. 

But somehow Cousins realized if he could get a good belly laugh, he could get two hours of actual restful sleep. So, someone wrangled a film projector for him, and some old episodes of Candid Camera (this was 1964 when this happened), and some Marx Brothers films. For this reason, he's seen as a pioneer in the field of humor and health.

Cousins also, through reading medical journals, realized the importance of Vitamin C in healing collagen (breakdown of collagen being a major part of what was happening in his body). 

He had to advocate for himself to get vitamin C therapy, and to get the film projector and films for his self-prescribed laughter therapy.

This book, however, is not a memoir. His account of his illness and recovery are a short part of the book, near the beginning. Much of the book is devoted to examples of the power of the mind to affect one's health, as well as the amazing things that can be done for "hopeless" conditions if the patient or the doctor is willing to think outside the box and look for the root cause of problems.

There are a few places in the book where he uses technical terms, and you may want to have google or dictionary.com handy, but it's only here and there. Mostly the book is very accessible.

Anatomy of an Illness is a book about advocating for yourself as a patient, working in partnership with your doctor, and about the power of the mind to affect one's physical well-being.

While it may seem strange for me to review a bestseller- Norman Cousins doesn't need my help in order to sell books- I found this book so valuable and empowering in my recovery that I wanted to share about it here.

40 years after publication, this book remains as relevant as the day it first appeared on bookstore shelves.

Anatomy of an Illness: As Perceived by the Patient (Twentieth Anniversary Edition) https://www.amazon.com/dp/0393326845/ref=cm_sw_r_tw_dp_U_x_bk7mCb9K391Y0

Sunday, April 30, 2017

Seeking Female Teen Lupus Patient in Newark, NJ area

Friday, April 28, 2017 
One Girl with lupus, Custom Designed  
Prom Dress in Newark, NJ area:

A young and upcoming designer, Christopher, would like to honor his mother and sister, who both battle lupus, by designing a prom dress for one young lady with lupus in the Newark, NJ area. He needs about 3 weeks to take measurements and complete the dress. He also has a makeup designer who would also donate their services to complete the look. The fittings would take place at a store/boutique in Newark. Please RSVP as soon as possible or by the end of next week, May 5, 2017.  If you know of someone who would be interested please contact the lupus Lenny at 973.379.3226, or email us at Lenny@lupusnj.org, Topic : Prom Dress.
Please pass this to anyone who you think might be interested. 
Thank you,
Lenny Andriuzzi
President and CEO
Lupus Foundation of America,
New Jersey Chapter, Inc.