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

Saturday, March 16, 2013


I have a horrible secret to disclose.  I'm jealous.  I'm jealous of other people who are sick with the same things as me and can leave the house and even drive, but complain that their pain is worse.  It makes it worse when those people insinuate that I must not try very hard if I'm homebound with pain, or suggest that really it's mental.  I'd expect this least of all from an EDSer.  I'm jealous of people with good insurance, because I know with good insurance, instead of state Medicaid, I'd be healthier than I am, and could see good doctors.  I could even get braces made for me, rather than having to buy them on Amazon or at Wal-Mart.  I'm nearly jealous of people with my disorder who can walk, drive, work, or go to school...and I hate that.  I hate being jealous, and I'm usually not a jealous person.  Some EDSers can even climb stairs, something I haven't been able to do for years.  I haven't been able to drive for years either.  It pisses me off more than I can say when people say "well I do it because I have to."  Do you fucking think I don't have to?  DH (Darling Husband) is also disabled and I need to drive, too, but I can't!  I can't hold my hands up on the steering wheel, or push on the gas or brake, because the pain is so bad.  Or do you think that I don't want to drive, go up stairs, and get out of this fucking house with every bit of me?  Do you think I fucking like staying in this house all the time?  Do you think I fucking like my life like this???  I'm so lonely I cry from heartbreak every day as well as cry from pain every day.  


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