A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Thursday, November 17, 2011
Catch Up
When you sit down and relax, the hip moves -- that causes pain. Then, when you go to stand up, the hip re-engages -- that causes pain. PAIN.
Pain all day. So, if I sit it hurts. If I stand, it hurts. I have to lie on my left side with a pillow under my right butt cheek and roll onto my back to get comfy.
Not a lot of fun.
My GP is back and I see him Monday.
Matt will be in Canada for more than 2 weeks, so, I'm not looking forward to it all. It's going to be hellishly hard.
I'm writing 2 posts at the moment, one on my most commonly asked search result: What causes miscarriage and one about PCOS and it's ties to autoimmune diseases.
The local community garden was denied it's application and I'm trying to lobby for the reserve next to us. The guys were just here to tidy it up, so hopefully others will like the looks of it.
The little grey cat taught us all a lesson in gluttony. Apparently he's been hunting the local lizards (skinks) and eating quite a few. He was very sick for a wee while, which the vet related to eating a box or two of chocolates. We caught him trying to bring one into the house the other day. Hopefully we gave him enough of a scare that he won't try to bring them home. That at least gives them a fighting chance to get away.
My eyes have been horribly sore and I don't know if it's the bright NZ sun or some sort of eye inflammation. They don't look red or dry, just very sore.
Hopefully I'll know more about my hip on Monday and have some time to finish those big posts.
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)
- 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)
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
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* 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
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
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
* Understanding Emotional Responses
* Grief & Grieving
* 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 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
0 comments:
Post a Comment