Tuesday, May 26, 2015

Saying Goodbye to My Chronic Friend Laurie from Hibernationnow

Laurie heading to her next destination. 
It's been a little over a month since my friend Laurie passed away from acute interstitial pneumonitis, a form of acute respiratory distress syndrome (ARDS).

During her illness, her husband Dan kept all of her Facebook friends informed of her situation with posts to her timeline. I truly appreciated him taking the time to include us, even though most of us had never met him or Laurie in-person.

After he shared the news that she has lost her battle, he made the generous offer to post our tributes on her blog. You can read my tribute here: In Memory - Selena: Until We Meet Again.

I found it very difficult to write the post I submitted. I think it was because I felt like I wasn't a very good friend to Laurie because of my chronic illnesses. I felt like our friendship had a lot of pauses - times when our conversation got put on hold because one or both of us were having problems with our health that precluded all other activities, including socializing. Now that she is gone, I mourn all those lost opportunities for getting to know each other better.

Laurie got sick in February 2015,  just around the time I was recovering from fibroid surgery at the end of January. Given the nature of her recent illness, her progression from having the flu to pneumonia to respiratory failure, I missed the opportunity to talk to her before she got placed on a ventilator.

Sadly she was never removed from the ventilator.

I know for certain that her suffering has ended and for that I feel grateful.

I also keenly feel the loss of her presence in my life. There will be no more blog posts, tweets or Facebook status updates. I can't just send her a quick Facebook message, text or call her up on the phone. All these little ways we had to keep in touch with each other, ways I assumed we'd always be able to keep in touch, no longer connect me to her.

I do admire the way that her husband handled this whole situation and the efforts he made to keep her chronic friends in the loop during this difficult time. I see myself having a conversation with my own hubby soon about how I'd like him to handle things should something happened to me. Because the reality of my life with chronic illness is that most of my friendships really do take place through social media now.

Please head over to Laurie's blog Hibernationnow and read all the tributes posted there. They are a heartfelt collection of remembrances for someone who was special and important to me and a lot of other people living with fibromyalgia, dysautonomia, Hashimoto's thyroiditis, chronic fatigue syndrome and a host of other chronic illnesses.

I made the effort to write my post in Laurie's unique and original style, something a bit different from my voice here on my own blog. I felt like putting myself in her writer's shoes was the best way for me pay tribute to her.

And yes, she actually appeared in one of my dreams the day that she died, as if to nudge me in the direction she wished me to explore in my post.

Until we meet again Laurie, (((gentle hugs))), love and fondest thoughts.

Your very real Facebook friend and fellow chronic illnesses warrior,


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Wednesday, March 11, 2015

"Sick on Top of Chronic" - Please Send #healingthoughts to Laurie

It's always bad news when you hear that someone is "sick on top of chronic."  You know, when a chronically ill friends catches a cold, flu, stomach bug or other infection.

Because of chronic illness, it's much harder when the chronically awesome get sick. Ordinary, everyday, garden-variety infections often morph into horrific acute illnesses that require medical intervention.

For example: this year, a lot of my chronic friends became sick with the flu.  That's probably because this year's flu shot was less than effective.

OK, so that explains why they are getting sick. But I keep seeing post after post on Facebook from my friends sharing that their flu lingered on for weeks.  Some of them developed pneumonia.  One person needed to go to a rehab facility for a few weeks in order to fully recover.

The most unlucky of them all is my friend Laurie who blogs over at HibernationNow.  She got the flu in early February.  Then she got pneumonia.  Then it morphed into a serious and life-threatening condition called Acute Respiratory Distress Syndrome (ARDS).

At least that's my best guess based on what I am hearing second and third hand.  I can't talk to Laurie about it because she is in a hospital in New York City, on a ventilator and in the ICU.

Her husband describes her as being "gravely ill."  This past week she hasn't been getting better, but she also hasn't gotten any worse.  It might take weeks or months for her to really get better.

Honestly, I am in shock.  If I think about Laurie's situation for more than a few seconds, I can't help but start crying.

I wish I lived closer, I wish I could go visit her.  I know she is sedated, but I just want to hold her hand and tell her that everything is going to be OK if she just hangs on and lets her body take it's time to start healing.

This whole situation also makes me really angry.

I know that viral illnesses are contagious and there is no cure for them, but I think there are more things that everyone can be doing to prevent them for spreading.  Things like:
  • washing your hands
  • staying home from school and work if you are sick, especially if you are running a fever
  • getting a flu vaccination (even if it isn't a perfect match for this year's strain)
  • eating well and exercising to build a strong body that can resist the flu

My point is that each individual's health is part of the greater public health.  If you get sick, there's a good chance the people around you are going to get sick too.  Conversely, if you stay healthy, then the people around you have a good chance of staying healthy too.

And believe it or not, flu vaccines help keep everyone healthy.

When you get a flu vaccine, you not only decrease your chances of getting sick, you contribute to something called "herd immunity."  Here's how it works: the greater the number of people immune to the flu through vaccination, the less likely the transmission of the flu to a person susceptible to it.  That means the likelihood of someone who can't get vaccinated getting the flu is greatly reduced.

Even when the vaccine isn't a perfect match, it can still prevent severe cases of the flu and complications from the flu. Subsequently, it can make the virus you pass on less effective at making someone else sick.

Honestly, I wish the "herd" around me, and Laurie, was more health conscious.

All I can do for Laurie now is send her healing thoughts and ask you to do the same.  Her present condition is very serious and her recovery is going to take a really long time. It will be measured in months, not days.  So if you believe in the power of prayer, please keep Laurie in yours for the foreseeable future. 

Hang in there Laurie.  Everything will be OK.

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Friday, January 23, 2015

Will accurately portraying life with chronic pain be a piece of Cake?

Lemon Cake Inspired By Thiebaut by DarisArt

My friends living with chronic pain and fibromyalgia are all a buzz about a new film called Cake.

According to Variety.com, the movie tells the story of Claire Simmons (played by Jennifer Aniston) who struggles with both chronic pain and a painkiller addiction.  It addresses the issues of suicide, grief and separation with a "darkly amusing" combination of humor and drama.

The story begins with the suicide of Nina, a member of the chronic pain support group that Claire attends.  After her death, Claire gets obsessed with Nina and starts an affair with Nina's husband (Sam Worthington.)  The story features Claire's support group leader (Felicity Huffman), housekeeper and physical therapist, as well as her husband.

Another article at Variety.com focuses on the fact that Jennifer Aniston doesn't wear make-up for this role.   According to the film's director Daniel Barnz, this is to show that Claire doesn't take care of herself.

A lot of my friends are sure are excited about someone with chronic pain being the main character of a movie.  The hope is that this character will somehow validate all our pain experiences to the doubters and disbelievers in our lives. I haven't seen this movie yet.  Neither have any of my chronic friends.  But we'll get our chance when the movie opens wide today in the USA (after a limited release in December 2014.) 

I do have some thoughts about all the press this movie is getting and all of the comments it has generated over on the Variety.com website.

First, I am concerned that Variety review says this movie is "...falling back on one of the hoariest and most overused of movie cliches..." and "...this manipulatively layered “Cake” probably won’t rise to the occasion..."  Ouch!

Second, while I guess being an actress and forgoing make-up for a role is some kind of Hollywood accomplishment, I think the explanation for why Claire doesn't wear make-up -- because she doesn't take care of herself -- is a little one-dimensional.  After all, I live with chronic pain and don't wear make-up, not because I don't take care of myself, but because I choose to forgo makeup and use my energy for other things I think are more important, like cooking or going to a doctor's appointment.  Which begs the question: does this movie really explain what it is like to live with chronic pain or does it just stereotype this condition?

Third, I am really concerned about how the story paints the picture of  Claire, the painkiller addicted chronic pain patient, because the fact is addiction is not common among chronic pain patients.  According to an evidence-based review of all available prior studies published in the medical journal Pain Medicine in 2008:
"...chronic opioid analgesic therapy exposure will lead to abuse/addiction in a small percentage of chronic pain patients..."  

Specifically, the risk for abuse and/or addiction was found to be on average about 3.27%.  They found that the greatest predictor of pain medication abuse or addiction was a current or past history of alcohol and/or illicit drug use, abuse or addiction.  Their recommendation? Pre-screening patients for these problems before prescribing opioid analgesic therapy.

Given all the changes that happened in 2014 with tightening access to narcotic pain medications, I'm afraid Cake is just going to be a visual aid for the public, feeding misconceptions about painkiller abuse.

Even healthcare professional have misconceptions about the proper use of narcotic pain medications to treat chronic pain.  Just this week, a prominent doctor in the field of fibromyalgia and chronic fatigue proclaimed, "You'll be pain free, because you'll be dead. Taking opioids for chronic, non-cancer pain increases your risk of death by 72%, according to a recent study in the journal Pain..."

I read a summary of that journal article and found it full of contradictory information.  For example, some researchers think that it's only the patients who obtain their narcotic pain medications from "nonmedical sources," like Claire in Cake, that overdose and wind up in the ER.  Then there is this quote (which I edited just a tiny bit for clarity):
"Safe and effective treatment of opioid-sensitive pain is possible... It requires deep pharmacological knowledge, experience, resources, considerable patience, and mental energy from a group of helpers who are able to take care of the whole bio-psycho-social conundrum of the chronic pain patient."  

That sounds exactly like what happens in my pain management doctor's office.  Hmm, too bad Claire didn't come and see my doctor.

But then again, someone treating their chronic pain appropriately with narcotic pain medications probably isn't the most interesting or provocative subject for a major motion picture, is it?  Hollywood loves misfits, even chronically ill ones.

Watch the trailer for Cake.

My most heartfelt advice for those who live with chronic pain and decide to go see Cake?  Don't get your hopes up thinking it will appropriately portray or advocate for the needs of people living with chronic pain.  Oh, and take it with a whole shaker of salt!

Until next time...

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