Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Thursday, February 24, 2011


Toes.  Yes, toes.  I've been dislocating my toes on a daily basis.  I tried sitting down for a serious talk with my toes, but you know how toes and their smart mouths can be.  We didn't get anything done and they are still dislocating.
Don't believe this smile, I bet these toes are as smart mouthed as mine!
I even have to get up now in the night to put my toes back in.  Wow.  I feel like I'm Alice in Wonderland and I'm falling down a dark tunnel called "Life with EDS."  There is nothing to grab onto and I keep falling in the deep dark abyss until the demon called EDS morphs me until all my joints will start dislocating.  A year ago, just after being diagnosed with EDS, I listened to a YouTube video in which the "star" mentioned getting up all night to put dislocated joints back into place.  I couldn't imagine my EDS ever being that bad, and I was pretty sure it wouldn 't be.  Someone who dislocates large joints on a regular basis may find my blog entry about toe dislocations whiny and stupid.  I am not being whiny though, I'm being scared.  I don't know what to do.  Can I inject my toes with super glue?  I really think that would work for small joints.  I don't care if I lose some mobility as long as I can keep the joint in place.  I know it sounds silly, but I feel like I may be onto something.  I am really, really scared and without my very best friend Vanessa I would have lost my mind by now.  She doesn't realize how brave she is.  I hope she will someday.  I cannot express how scared I am without crying hard, as it is I'm crying already.  What will happen to me?  Will I start dislocating large joints?  Can I stop it from happening?  It seems everything I learn about EDS is bad stuff.  I hate having EDS but, I try to look to the positive.  I can say that I never would have met Vanessa and my other Twitter & FB friends otherwise and I think having EDS will make me stronger in the long run.  I just don't feel very strong right now.

1 comment:

  1. I understand your fear! I have been lucky so far with EDS in that I do not get full dislocations, only subluxed joints. But I have been on a rapid decline for the last year and they are subluxing more and more frequently, and with more severity. I worry that soon I will be dislocating too, and I cringe at the horror stories I hear from other EDSers about constant dislocations. Let me know how the superglue idea comes along, LOL!


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