Oh My Aches and Pains!

Saying Goodbye to My Chronic Friend Laurie from Hibernationnow

2015-05-26T06:58:00.000-07:00

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,

"Sarita"

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

2015-03-11T06:48:00.000-07:00

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.

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

2015-01-23T07:05:00.000-08:00

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...

More Pain Means Less Everything Else

2014-10-23T07:24:00.000-07:00

I've been living with more chronic pain lately and it's starting to show.

My mother-in-law called the other day and asked my hubby, "Why hasn't Selena posted on her blog lately? Is she OK?" She wanted to talk to me, but I was in the middle of a task, so I asked if I could call her back.

That gave me time to really ponder her question.

The truth is, I've been in a fibro flare-up for over 18 months now. I know how it started -- being involved in a car accident last year. Because getting into any kind of accident when you have chronic pain is probably one of THE worst things that can happen to you.

But then I realized the chain of events that has kept my flare-up going since then. Things like:

ongoing dental work, in the form of crowns and root canals, that is causing me more pain. It seems like every 6 months I need another dental procedure! Next up...another root canal.
an increase in doctor's appointments, which are using up a lot of my available energy. But I feel the visits are an important part of my "get better" plan.
participating physical therapy, which unfortunately is increasing my pain and fatigue in the short run. I am hoping that if I stick with it, it will be helpful to me in the long run. *fingers-crossed*

And let me not forget my post-accident anxiety about being in a car. I am really paying attention to how other people are driving now and it is downright scary sometimes. I'm working on being less hyper-vigilant, but in the meantime, a ride in the car can be quite draining.

Here are some of the other things that a severe pain flare-up can do to us:

1) Any increase in severe pain mean you have less of everything else: less energy -- physical, mental and emotional, fewer good days, a decreased ability to leave the house, run errands and go places, and a diminished capability to get things done.

2) Any time you have an increase in severe pain, you are forced to cut back on all your activities -- physical, mental and emotional. The longer the duration of your increased pain, the more you cut back.

3) Deconditioning can be the result of a prolonged reduction in physical activity due to an increase in severe pain. Deconditioning is defined as:

...the loss of muscle tone and endurance due to chronic disease, immobility, or loss of function.

Deconditioning becomes another challenge to overcome on your path to recovery from a severe flare-up.

4) Ongoing pain flare-ups increase the other symptoms associated with your particular chronic pain disorder. For me, this means more fibro fog, more painsomnia (pain-related insomnia), more fatigue and more numbness and tingling in my arms and hands.

So why haven't I been blogging more lately?

Clearly my increased pain, fatigue and fibro fog all play a significant role.

But it is also my conscious choice to spend more of the energy I do have on the things that have the potential to help me get better in the long run, like treating my dental pain, seeing my pain management doctor and doing my best to participate in a gentle and graded physical therapy program. Because I want to get back to my baseline, to be a 30 out of of 100 again. I've been more of a 20 for the last 18+ months and frankly, I'm not happy here. (See the scale I am referring to here. )

I want to get back to container gardening, crafting, gaming and doing more of the things I used to be able to do a regular basis. That includes achieving my goal to consistently blog and write too.

So while most normal, healthy people might recover from a car accident in 6 to 8 weeks, the simple fact is, for someone like me living with fibromyalgia, it takes more like 60 to 80+ weeks to recover. It's the proverbial situation of "adding insult to injury." When you live a life with chronic pain and/or chronic illness, it just takes more time to bounce back from any added severe stress, injury or trauma.

But I will get there, I promise you and I promise myself. It is just going to take more time, energy and patience. What keeps me motivated? Looking forward to less pain meaning more living my life.

GRAPHIC: You can live with chronic illness and be...

2014-06-27T08:35:00.000-07:00


You can live with chronic illness and be happy or you can live with chronic illness and be angry. Either way, you're still going to be living with chronic illness. (Click on image to enlarge.)

I have been struggling lately with more symptoms than usual.

First I got some nasty stomach virus on Mother's Day that landed me in the ER with uncontrollable vomiting and the need for IV fluids and anti-nausea medications.

Then, a week later, a very nasty pain flare-up began. I've been living with a higher than normal pain level and numbness and tingling in my right hand for the last 5+ weeks. Yesterday I went for an EMG and nerve conduction study. Hopefully it will shed some light on whether I have a pinched nerve and where exactly it is being pinched: my elbow, my shoulder or my neck.

Between all the pain and other symptoms, the medications I have been taking to manage my pain and fatigue from being in more pain, I haven't been posting here or on the Oh My Aches and Pains! Facebook page. But I have been thinking about how much I miss regular blogging and what a struggle it has been to get back into a regular posting groove.

But I will do it. I will get there....eventually.

For today, I offer this graphic I created which illustrates my philosophy for living my life with chronic illness. This is my secret, my tool for making a real life possible despite chronic illness.

I've been trying to explain this concept to a healthy friend of mine and they're having trouble understanding this.

"You're sick," they say, "so how can you be happy about that?"

"Well, I'm not happy about it, but I don't let it get in the way of being happy about being alive and being happy about the good things in my life."

"But you're sick," they continue. "Do you really have good things in your life? Your chronic illness seems to have taken a lot of those good things away...."

"Yes, but I am finding new things to be happy about even though I am sick," I reply.

They scratch their head and look puzzled. To them, being sick means being unhappy, so they just don't get where I am coming from. Lucky them for not having to have to understand this!

Perhaps you my readers can leave me a few notes in the comment section below with some alternative ways of explain to someone healthy how it is possible to be sick and happy at the same time.