A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Wednesday, October 19, 2011
Combustion
I like to think of the anger inside me as that powerful agent of combustion.
My child is excessively clingy, my husband is grumpier than hell and I hurt.
My doctor is overseas for a while. Apparently he wrote a letter confirming there is nothing physically apparent on the xray. Everything in my hips screams. I can't rotate it. I can't move it. I can't walk. I can't climb. I can't eat or sleep. It hurts.
SOMETHING is wrong.
He copied my Rheum on the xray and I suspect the letter. He didn't mention to me he was going overseas.
I have spent the morning on the phone. Trying to convince the GP's office to refer me to the hospital but they keep telling me it's against practice for another GP to take over a patient.
I have called the Rheum's office and keep getting put onto answer phones.
I've called various physio offices practically begging to take me on. Tomorrow at 3pm. Do they have any experience in mixed connective tissue disorders? Ummm...No.
Next!!
Things are chaotic here. Soph is so bored. She's becoming destructive.
I can only play Barbie for so many hours before I want to scream.
Matt is grumpy and cross. With me. With life.
People want to know what it's really like living with an ongoing illness? With chronic pain?
It's hard. It's not fun. It's horrible. It's rejection. It's being a blip on the radar of anyone who gives a damn.
Fights between one another. Kids who feel pushed to the back burner.
It feels like this volatile gas is building up under pressure. All it take is that magic of combustion before it explodes all over the place in excess.
There are days when you wish you didn't have to get up. That would be today. But I have to. There is no one else.
And there is tremendous pressure to be THAT mother. The one who can push through it all. With a smile.
I did laundry, cleaned and made brownies yesterday while battling a headache from the Tramadol and downing anti-naus meds.
I really wish there were days when you won medals. When someone brought you dinner. When they offered to vacuum. I want the gold star and the accolades for pushing through this pain.
I just don't want the damn thing to blow up into a billion messy pieces. I'm trying to prevent that combustion.
Today is so hard.
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.
Labels
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
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- carry on (1)
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- miscarriage (5)
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- neglect (1)
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- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
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- TRAPS (3)
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- weaning (1)
- xray (1)
- Yeti (1)
Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
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Familial Hibernian Fever
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* Anaesthetist.com
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* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
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* Autoinflammatory vs Autoimmune
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* Lupus UK
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Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
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* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
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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