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 The doctor rattled off that he was prescribing two things for fibromyalgia over a year ago today. (I will have been Lara legally for 2 years in 28 more days.) It seems I’ve marked the anniversary by recovering from yesterday’s flare-up.  The  phone also rang twice for me this morning. One was the rheumatologist’s office calling to tell me my Vitamin D levels were normal, and the second was the Hamilton Center calling to ask me to come in for an interview with their job placement program. (I have misgivings about these programs, and Indiana’s “work first” model doesn’t work well for people with disabilities, but regardless of my misgivings there are things I need besides food.)  As I sit here, trying not to fall asleep as I type this, I’m wondering if the phone will ring again today.

The dental appointment went well, although it left some questions about things Anthem has told me about the coverage.  No new wisdom teeth.  I went to pick up prescriptions from Sam’s Club  later and I must have remained standing for too long.  I went into a flare, and managed to moan and groan in the rheumatologist’s office, and nearly screamed when the phlebotomist tried to draw blood for the Vitamin D levels test.  I’ve never had a blood draw hurt this month. Otherwise, I’ll be going back to physical therapy and I’m supposed to be referred to a podiatrist to see if I need ankle braces, while suggesting I continue to go for daily walks to strengthen them.  The podiatrist she mentioned – the same one who did the surgery on my bone spurs – is one I was hoping to never see again. It’s not that he was a bad guy. It’s just that he gave me the impression he should be getting ready for retirement.

Fortunately, yesterday is in the past and whatever fallout that has yet to occur is in the future. Today, despite the itchiness that always occurs after a flare for me, I’m calm and relaxed. There may even be pizza or fried chicken for dinner tonight.  There are two live action games this weekend, and I’ll have gotten paid from freelancing two weeks in a row now. Not to mention there’s a possibility of a steady paycheck in the future.

Sure, things are not great right now, but they seem to be picking up after months of just generally being crappy.  

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Caption: People with fibromyalgia have to deal with body wide aches, painful pressure points, crippling fatigue, and severe depresson. What they hate the most is being told they're not sick.  Fribromyalgia is real, treat it right.

 
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 September is Chronic Pain Awareness Month. (Although I have to ask, how many people aren't aware that chronic pain exists?) I'll be posting something on them daily and trying to promote these posts. Given the events of the last few weeks, I thought it'd be time to revisit this photograph.  The next two days will focus on diseases I've been diagnosed with.

[Description: A brown-haired, blue-eyed woman on a beige background. She wears a purple shirt with a back and white-striped ribbon. Braces adorn her wrists, knees, and right ankle.]

Captiion:
  • Do you suffer from Crhonic pain?
  • Have you been told or do you feel you have fibromyalgia?
  • Easy or unexplained bruising?
  • IBS, Acid Reflux, or other Gastrointestinal issues?
  • Do you have hypermobile joints or  are you double-jointed?
  • Do you injure easily or have unexplained fractures or bruises?
  • Fragile skin that tears easily or poor or slow wound healing?
  • Do you injure easily? Unexplained dislocations or fractures?
  • Problems with balance? Are you the clumsy one?
  • Velvety smooth or stretchy skin?
  • Are doctors stumped or clueless when they try to figure you out?
  • Have you heard of Ehlers-Danlos Syndrome?




And the answers for me  right now are: yes, yes, yes (although I still believe this is PLMD in most cases), yes, no, yes -- ankles, yes, not that I've noticed, and I think my primary care physician has no idea what's wrong with me exactly.
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When my GP at the time gave me the fibromyalgia diagnosis, he asked about my quality of life. I did not know what the phrase meant then. Even though I’ve seen more people use it as I’ve read about the experiences of people with disabilities, I am still not sure what the phrase means.  Perhaps someone else could explain this to me.

Does quitting my job lower my quality of life?  Some people would say it does. The state of Indiana Family and Social Services Administration seems to think that I’m still an able-bodied adult.  I can forgive them for this since they do not have my current medical records. Staying on the job and the stress that came over worrying about being fired would also fall under this broad category. Perhaps the promoters of this phrase are talking about something else.

Is my quality of life lower because there are days when I must rest because of pain or fatigue?  I’m not bedridden, unlike some other fibromyalgia patients. Even if I were, not everyone needs or wants a great deal of social interaction. Some people would be completely content alone in a library at the end of the world, and I would be content to live in such a world even if I broke my glasses. It seems that we must look elsewhere to find the phrase’s meaning.

Is my quality of life lower because I no longer do some of the things I used to do? True, I don’t do some of the things now that I would enjoy doing. As we mature, however, we stop doing many things we once enjoyed doing.  All it means is that things have changed. I still enjoy playing with building toys, such as Legos and Erector sets, but I no longer play with these toys unless a younger relative is involved.  It’d be fun to break out the Legos and build things with them, but other adults would look at me strangely. Yet another exploration of the meaning of the phrase falls apart.

Maybe people think my quality of life is lower because I use a cane.  I’ve seen the occasional look of pity I get from older people. I have also heard phrases like, “Isn’t getting older fun?” Plenty of people use canes and seem to be content with their lives.  A cane is simply a tool.  It supports a painful limb, and it prevents the falls that occur because of dizziness or muscle weakness.

I can make guesses about what people mean all day. The phrase bugs me.  People seem to use this phrase when they want to make a comparison based on their lives.  The context suggests that there is threshold. If a person falls below this threshold, then their life is not worth living. I do not live anyone else’s life.  I can only say I am willing to continue this life.  If a doctor is really concerned about my quality of life, they can give me a portion of their income.  Supplementing my income with additional money would do more to improve the quality of my life than asking me silly questions or prescribing prescription drugs ever could. 
sinisterporpoise: (Default)
 I went out to see Cake last night. I am unaware of how I became aware of this film.  I probably came across it due to my obsessive nature.  In the past few months, I've read a great deal about fibromyalgia and chronic pain.  I did not expect to come away from the film with the same feeling I got from watching The Hobbit: Battle of the Five Armies or Guardians of the Galaxy.  I expected the film to be a painful and sometimes funny portrayal of someone dealing with chronic pain.  It is indeed that, but the movie suffered from a few flaws that made it less enjoyable.

The movie did contain some realistic elements. It is also one of the few films where the main character wears little to no makeup.  (The use of some make up to show the scars she has is assumed.) The viewer sees Claire, Jennifer Anniston's character putting her hands along the walls  to support the pain in her leg.  At one point in the film, viewers see the title character lying in bed moaning in pain, unable to go to sleep until she takes multiple narcotic painkillers.

Starting with a suicide is a good, if somewhat cliched way to start any dark comedy.  As group members are asked to share their feelings, Claire is the only one who congratulates the deceased member for having the guts to do what none of the rest of them could. When she returns home, she is kicked out of the group.

Later that night, she has a vision of the deceased woman.  The visions leader her through a series of increasingly severe suicide attempts.

From a structural standpoint, the movie did not keep a consistent tone. Its as if the writers wanted to avoid taking them where the plot was leading them.  While it is understandable that dark comedy writers may not want a sad ending, it makes the work weaker artistically.  A sudden epiphany leading the character to a moment of redemption does not make sense. It does not even make sense in Stephen R. Donaldson's The Chronicles of Thomas Covenant, which is a far superior redemption tale.  (Although I wanted someone to kill the title character about 50 pages into the first book and kept wanting someone to do so until the final pages of the first trilogy.)

Cake also touches on prescription drug and alcohol abuse, although it never says the character is addicted to the Percocets she seems to swallow like candy.  Now, not everyone who has chronic pain becomes addicted to these painkillers. Some people avoid them entirely, but the main character's painkiller and alcohol abuse are used to suggest that she's not dealing with her real problems.  Several cliches exist here, as well, including drug-seeking behavior.  In order for the story to make sense, the viewer must believe that she uses drugs and alcohol to avoid her psychological problems. Nowhere is the suggestion that the pain may continue even if she does everything her doctor tells her to do.  Some people may come away with the film with the impression that all long-term prescription painkiller usage invariably leads to addiction. Many patients try to avoid addiction and will fully explore other relief options.

What did Cake get right?  The main character is often shown in a disheveled state wearing a loose-fitting sweater and what appears to be a sports bra.  If we accept that she suffers from depression as well, the lack of attention to hygiene is understandable.  If the pain goes through her entire body, her wardrobe is also understandable.  

Throughout the course of the movie, we learn that she has driven multiple people out of her life, with the exception of her housekeeper.  If the story explains what caused her condition early in the movie, I missed it. At the end, you do finally learned what happened to her, and an additional information as to what Claire to her depressed state.

Cake was not a great movie. It had some realistic moments, but it also suffered from structural flaws that can be avoided by giving an unhappy story a happy ending. Redemption tales are better IF you drop hints throughout the story that the character is trying to change his or her situation.




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