My 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 ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, February 22, 2011

Rare Disease Day Monday 28 February 2011

The rare disease I live with is: Ehlers-Danlos Syndrome (plus possible Chiari, but I will answer questions for EDS),

I was diagnosed with it in the year: 2009

But I had symptoms since: I can't remember not being in pain

The biggest adjustment I’ve had to make is: I can't go walking like I used to, whether at a park or at the store

Most people assume: if I smile I'm my pain levels are low or non-existent. If you've had pain for your whole life doesn't it make sense that you've learned to smile through pain?:  My favorite medical TV show is: Scrubs


Each day I take __ pills & vitamins. (No comments, please) 29 to 33 depending on how I'm doing that day

Regarding alternative treatments: I wish! Medicaid doesn't pay for them. The best I can do is herbal teas, and I have a massager I use on my legs with are always hurting and feel very heavy.

I really miss doing: hiking in the woods and wearing high heels.

My hobbies I can still do (or have begun): scrapbooking, writing, reading, collecting books, pen palling, blogging, FB, & twitter

If I could have one day of feeling normal again I would: go hiking!

Want to know a secret? One thing people say that gets under my skin is: "You'll feel better tomorrow:" or "You're too young for so many medical issues." This is said with an implied you-aren't-really-sick.

It makes me feel special when people: Someone opens the door for me or gives up their seat to the girl with the cane. ;-) It really is seriously painful to stand. It reminds me that chilvary is not dead.

My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day/And I'm thirsty anyway./So bring on the rain."

What good stuff has happened because of my rare disease:I've made a lot of friends on facebook & twitter I'd never have met otherwise.

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