Hey everyone!  I apologize for the lack of posts, I am still under the weather.  Whatever this cold/flu thing is, it has wiped any energy I normally have out of my system.  I just saw this part of the speaker series featuring Ellen Lenox Smith, and I though you might enjoy it.  I saw Ellen speak at the EDNF conference, and found her to be an engaging speaker, and an amazing person all-around.  Speaker Series.
 
 
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It doesn't seem quite fair that those of us with EDS should also be able to get the flu, bronchitis, chest colds, and the like.  I am coming down with one of the above currently, and am trying with all means possible not to cough.  I have my supply of cough suppressant, cough drops, teas, etc.  Why all coughing avoidance, you ask?  Like many EDSers, I have ribs that have trouble staying in place normally, and awful costochodritis.  Every time I have a coughing fit, a rib or three seems to sublux/dislocate.  Those of you who have felt this know the pain, and also know that you don't want to press on things too much for fear of making the swelling of costochondritis worse.  And, I might be the only one, but I also am afraid that one day I am going to press a rib into my lung or something crazy like that.  That would be my kind of luck.  Anyways, do you have any surefire cough remedies?  What do you do when you have a cough to keep your ribs where they should be?  Let us know in the comments!

 
 
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Interesting info, as many of us take supplements (and are told to do so by various practitioners).  There are definitely a few in the "conflicting" territory that I swear by (cranberry for and to prevent UTIs, for instance, also GABA).  Others I totally agree are snake oil (glucosamine, any type of collagen replacement, etc.).  A large version of the chart can be found here.  What are your thoughts?  

 
 
Ehlers-Danlos Syndrome, Hypermobility type: A characterization of the patients' lived experience.

Abstract:

Hypermobility type Ehlers-Danlos syndrome (EDS-HT) is an inherited connective tissue disorder clinically diagnosed by the presence of significant joint hypermobility and associated skin manifestations. This article presents a large-scale study that reports the lived experience of EDS-HT patients, the broad range of symptoms that individuals with EDS-HT experience, and the impact these symptoms have on daily functioning. A 237-item online survey, including validated questions regarding pain and depression, was developed. Four hundred sixty-six (466) adults (90% female, 52% college or higher degree) with a self-reported diagnosis of EDS-HT made in a clinic or hospital were included. The most frequently reported symptoms were joint pain (99%), hypermobility (99%), and limb pain (91%). They also reported a high frequency of other conditions including chronic fatigue (82%), anxiety (73%), depression (69%), and fibromyalgia (42%). Forty-six percent of respondents reported constant pain often described as aching and tiring/exhausting. Despite multiple interventions and therapies, many individuals (53%) indicated that their diagnosis negatively affected their ability to work or attend school. Our results show that individuals with EDS-HT can experience a wide array of symptoms and co-morbid conditions. The degree of constant pain and disability experienced by the majority of EDS-HT respondents is striking and illustrates the impact this disorder has on quality of life as well as the clinical challenges inherent in managing this complex connective tissue disorder.

PubMed info here.
 
 
 
 
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This is the time of year when we all talk about making our resolutions for the new year.  Since spoonies like us cannot resolve to "be healthy" (wouldn't that be nice!), I've come up with a list of resolutions that are applicable for those of us with chronic illness and chronic pain:
  • Be kind to myself:  Yes, I didn't get my to-do list finished today.  Maybe I didn't even look at it.  But that's OK.  Let whatever you accomplish in any given day be enough.
  • Be more organized:  Go into doctor's appointments with articles and questions at the ready.  Keep track of any insurance changes in 2014.  Keep all of my doctor's notes, tests, copies of prescription, etc. filed and organized instead of in a pile.
  • Fret less:  Bad things happen; things change.  Adapting without stressing is difficult, but stress and worry will not solve any problems.  In fact, they will usually compound health issues.  Takes deep breaths, go for a walk, meditate, talk it out, etc.  Try not to stew.
  • Interact more:  Talk more, whether online or in person, with others in the same health situations.  Find out how they tackle problems, deal with health issues, etc.  In sum, get support from those like you!
Do you have any resolutions for 2014?  If so, let us know in the comment section!  Happy New Year to all of you!

 
 
I hope that everyone is recovering nicely from however you celebrate December 25th.  Just remember:
 
 
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Here's to a holiday season filled with many, many spoons.  Merry Christmas to you and yours.

 
 
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Holidays are tough for those of us with chronic illnesses and pain.  Typically, hours of travel, cooking, eating, mingling, and pretending that you are fine are expected.  Holidays are, in short, a recipe for a pain explosion.  I can usually make it through Christmas day OK, but I am suffering (i.e. stumbling from my bed to my couch is the extent of my movement) for the week following.  This year, I am going to try to follow my own advice for a low-pain holiday:
  • Know your limits!  We've all heard this before, usually in the context of drinking alcohol, but it applies here as well.  If you know that doing something will dislocate a few ribs, gracefully bow out of that activity.  If someone wants to make a nasty remark at Christmas, they are the grinch here, not you.
  • Remember allergies/intolerances!  Everything on the table probably looks delicious, but if you are like me and have become allergic/intolerant to many ingredients, remember to ask what is in the dishes.  I try to bring a few of my own allergy-free (and easy) dishes along to share.  
  • Take breaks!  Have a quiet spot picked out (if you can) where you can retreat for a few minutes to gather yourself.  Even a bathroom will work.  A few minutes of meditation can do wonders.
  • Have a partner in crime!  My husband is mine.  We have a secret word or look that means that I need a break or I need to leave.  He can make the announcement when I'm not feeling well.
  • Relax!  It is difficult, but try to stay as stress-free as possible.  Let those well-meaning comments and suggestions about your health bounce off you.  Remember, the people that say these things believe they are being helpful.  It's Christmas, so give them a pass.  
Happy holidays to all of you!

 
 
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I've realized that in the past 2 years, I've withstood a ridiculous amount of medical procedures, many of which I wouldn't wish on my worst enemy (chest tube, anyone?).  I've also battled with insurance companies, disability, non-believing physicians, and dubious friends, family, and co-workers.  Some of these skirmishes are ongoing, some probably will always be there.  But even through the frustration and the daily pain, I try to keep moving forward.  I have been called a "tough cookie" many times, and I believe that living each day with chronic pain and illness has developed the resilience I now have.  It makes sense that spoonies like us have to be resilient; it becomes a trait necessary to survive with chronic pain and illness.  Resilience is the only way we can function and live anything close to a "normal" life.  It is how we can bounce back after a hospitalization, clean the house during a flare, educate physicians, and care for others.  We are spoonies, are we are resilient!