A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Thursday, October 13, 2011
The Hip Song
Hot flashes, sweats and a really agitated, anxious mind space. I had to declutter the bedroom, despite the pain because I felt so dizzy, sick and confused.
I did far too much walking and am paying the price.
The pain is simply destroying my ability to cope. I've had a bad day. I scratched the car door, got a parking ticket and can't walk very far.
I also have a very bored 6 year old who needs to be doing things.
When I was hobbling to the car, I started singing:
Every Step You Take lyrics (the revised edition):
Every step I take
Every limp I make
Every bone I break
Every step I take
The pain is hurting me.
Every single day
Every pain I obey
Every exploratory surgery
Every night I pray:
"Please go away!!"
Oh can't you see
The pain is killing me?
How my poor hip aches
With every step I take.
Every move I make
Every bone I break
Every smile I fake
Every pain killer I take
It'll be hurting me.
Since my diagnosis, I've been lost without a trace
I dont't sleep at night, because of my back brace
I took those tablets and my head is in outer space
I feel so numb and I'm like a mental case
I keep calling doctor, doctor please...
Oh can't you see
I need a cup of coffee?
How my poor hip aches
With every step I take.
Every move I make
Every bone I break
Every smile I fake
Every pain killer I take
It'll be hurting me.
And, just because they're gorgeous (and often suffer from hip dysplasia):
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
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Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
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Categories
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
- Badger (1)
- Beluga (1)
- Blame (1)
- boobs (3)
- bottle feeding (1)
- carry on (1)
- cats (2)
- chemicals (1)
- Christmas (1)
- Chronic Illness (8)
- Chronic Illness Cat (2)
- chronic pain (4)
- cleaning (1)
- Co-Dependence (1)
- Colchicine (3)
- cooking (2)
- Depression (1)
- disability awareness (1)
- Doctors (4)
- dogs (1)
- domestic violence (1)
- drugs (5)
- dyslexia (1)
- eco (1)
- Eczema (1)
- Eeyore (1)
- FAIL (1)
- Failure (2)
- fall (1)
- Flare (2)
- gentle parenting (3)
- Grief (3)
- Guilt (3)
- halloween (1)
- Hedgehog (1)
- hip (2)
- Invisible Illness (11)
- Jen (3)
- Journey to Diagnosis (9)
- keep calm (1)
- Kidney (1)
- life (1)
- Loss (5)
- Mediband (1)
- medication (2)
- melatonin (1)
- memes (1)
- miscarriage (5)
- Miss S (4)
- MTX (1)
- neglect (1)
- Negotiating Pain (1)
- Notes to Doctors (5)
- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
- public health system (3)
- Questions (2)
- Recovery (1)
- school (1)
- seroquel (1)
- song (1)
- Steroid (1)
- sticks (2)
- Survival Guide (1)
- tips (1)
- tired (1)
- transitions (1)
- TRAPS (3)
- twin loss (1)
- visible illness (2)
- wankers (1)
- weaning (1)
- xray (1)
- Yeti (1)
Blog Archive
-
▼
2011
(35)
-
▼
October
(11)
- Maximum Tolerated Dose or How I'm an Idiot
- If You're On Prednisone, You NEED a medic alert br...
- Predni-Oh nooo-sone
- Into The Sticks
- I was just looking on Google for "normal xray ongo...
- Combustion
- Remembrance/Memory Candles
- The Invisibles, a new film by Pixar & Disney
- The Hip Song
- Miscarriage and Baby Loss
- The Roulette Wheel of Diagnosis
-
▼
October
(11)
Blog Roll
- Be Careful What You Pray For
- Built in Birth Control
- Holy Pee Stick, Batman!
- Leaps of Faith
- Lupus Ranting
- Not Standing Stills Disease
- Recurrent Miscarriage
- Rheumatoid Arthritis Guy
- The Healing Plate
- The Post Divorce Chronicles
- the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer
- Understanding Invisible Illness
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