A great lady once said:

“I have come to realize more and more that the greatest disease and the greatest suffering is to be unwanted, unloved, uncared for, to be shunned by everybody, to be just nobody" Mother Teresa( 1910 – 1997)


Mother Teresa was a Catholic nun from Albanian who founded the Missionaries of Charity in Calcutta, India in 1950. For over 45 years she ministered to the poor, sick, orphaned, and dying, while guiding the Missionaries of Charity's expansion, first throughout India and then in other countries. Following her death she was beatified by Pope John Paul II and given the title Blessed Teresa of Calcutta.

2005 Southeastern Eucharistic Congress

By the 1970s, she was internationally famed as a humanitarian and advocate for the poor and helpless, due in part to a documentary and book Something Beautiful for God by Malcolm Muggeridge. She won the Nobel Peace Prize in 1979 and India's highest civilian honour, the Bharat Ratna, in 1980 for her humanitarian work. Mother Teresa's Missionaries of Charity continued to expand, and at the time of her death it was operating 610 missions in 123 countries, including hospices and homes for people with HIV/AIDS, leprosy and tuberculosis, soup kitchens, children's and family counselling programs, orphanages, and schools. More at Wikipedia

is this the way it goes?

I have not posted for a while,
often i sit and stare,
at the computer,
wondering what to say,
not knowing what it is all about anymore.

All the fight has gone out of me, all the rage.
Maybe i have turned into my disease.

Hear no evil

An illustration of one of the three semicircular canals of one inner ear and associated structures

Soon I may not be able to hear any evil - well I suppose that is putting a positive slant on it. I seem to be going deaf, well more deaf. It actually feels like the ears are blocked full of something. It's like when you are at an altitude and you need to blow your nose to unblock your ears, but this does not unblock.
Is it part of Tinnitus? One specialist said it sounded like Menieres Disease and said "but that is the least of your worries."
When people, especially my husband, are not talking in my direction I cannot hear what they are saying. I'm not sure if this is because I am lip reading and not knowing it, or because of the pitch of his voice or what?

DIAGRAM: An illustration of one of the three semicircular canals of one inner ear and associated structures from Author United States government from Wikipedia public domain

Forgot my ABC's

I went to the immunologist after about 2 years and when he asked me what medicines I was taking I could remember the names but not the amounts! I felt like I had let myself and him down. I use to carry this information in my bag at all times, then I suppose the tablets changed and I have just not updated this information.

So remember your A, B,C's ...

Are you taking any tablets and medicines?

Bring them with you to the hospital and all appointments - even follow ups.

Carry a current list in your wallet.

The reason I started carrying the list at all times was after I was suddenly admitted to hospital and the same thing happened - I could remember what I took but not some of the names or amounts. This delays treatment and makes it harder for the patient to get the proper treatment. Also I was kept in overnight and the hospital kindly made up a script for my essential medications - very professional treatment, don't you think?

PHOTO THANKS TO jgibson3825

Dear Doctor,

Re: my diagnosis

I am writing to let you know I have finally been diagnosed and I was hoping you could give me back a few years.

I have had symptoms for over 10 years and I have finally been diagnosed with polymyositis. This is an inflammatory myopathy that causes muscle weakness and muscle pain in the muscles closest to the body. It is an auto immune condition.

I was diagnosed from a muscle biopsy. I have been to so many specialists and I hope that maybe you would remember me so that if someone else comes into your office saying they have muscle pain in their arms and legs, and a feeling that their muscles won't relax and difficulty with fine motor skills and an elevated CPK, that you take the time to listen and try and work with that patient to find out what it is. For 8 years no one offered me a muscle biopsy.

Merry Christmas,
yours sincerely,
G. N.

P.S. I am not my disease (but knowing what it is has helped me greatly)


TO: the endocrinologist, the pain specialist (who said it was fibromyalgia), the psychologist (that said I had cognitive defects and referred me to the immunologist), the neurologist (who gave up after finding out it was not MS) and the rheumatologist (who diagnosed and treated me for 2 years as having Sjogren's syndrome).

PHOTO BY bwavobunny

Well you got me on a bad day

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer, the French medical missionary, 1931
Pain is called The Universal Disorder as we all get it at sometime or other I suppose - even babies. It is just part of being human and I suppose I would not like being one of those rare people that feel no pain as that could cause all kinds of complications. Living in constant pain, as I and many do, is not fun though.
The pain I feel (I refuse to call it "My Pain") is caused by muscle inflammation due to autoimmune dysfunction. I know what causes it but that does not really help - stopping the pain helps and that means using drugs prescribed by the specialist. Acupuncture and homeopathy have not helped with the pain as much as I had hoped. Today I have a lot of break through pain and need to take extra tramal. I do not know why this is, why I have extra pain, as there never seems to be any rhyme or reason.
They have started me on a new drug to dampen down the immune system and hopefully prevent future muscle wasting. Did you know that exercise will not bring back the wasted muscles but it will help prevent further wasting. This I found a bit depressing!
I am going to go and take another pain killer as I cannot sit here any longer - tomorrow will be a better day.

THANKS lilcougerchic10

A merry go round that is not fun

Many diseases may be clear cut but if it is one thing I have learnt in the last 10 years it is that diagnosing an autoimmune disease is not. I have been to so many doctors and specialists who just pass me on to the next specialist - the medical merry go round - and I have almost given up many times. I have been given a few diagnosese over the years but when treatments do not work - after a year or so - they decide it may not be what they first thought. I have also been told it might be MS or Lupus or Fibromyalgia or Chronic Fatigue or Ankylosing Spondylitis (this is a real disease, I did not just make that up). I have been shocked that many well respected specialists are happy to give suggestions of what it might be. A lesser person might have become very scared but I am not my disease. This mantra has helped me as no one else has.

So, what is the upshot of all this? If you are not well and you do not have a good G.P. on your side, you must be your own advocate. This is very hard if like me you are being told that it is definately autoimmune in nature. Why? Because there are so many autoimmune conditions and it is very hard to narrow it down, especially if the doctors cannot. One place to start is autolist, where they list disorders in sections such as Neuromuscular (affects nerves and muscles) or Vasculitic to (do with blood vessels and veins) etc. They also have an alphabetical list of over 80 immune disorders and their symptoms and recommended links.

Also consider that only you know your symptoms and how you feel and maybe you are not explaining them in the way that the specialist expects to hear them. Take pain for example how many kinds of pain are there and how do you explain them? Many diseases have specific measurable signs that show up on EMG's or blood tests but many do not. People with these symptoms are often left undiagnosed - put in the too hard basket.

Be strong. Do not be afraid. You are a detective on an interesting and difficult case and above all remember You Are Not Your Disease.

Thanks mel2u for drawing

You see, you cannot see.

"You cannot see what is going on inside my head. You cannot see what is going on inside my body. I see this as a plus - all good.

If you could see what was going on inside my head - the verbal diarrhea - oh it would be very, very bad.

If you could see what was going on inside my body:

1. it would appear grotesque, a major battle ground, cell against cell, body attacking it's own body - a very frustrating, confused battle where no one wins (or something like that)

2. you would feel sorry for me and I don't want your pity.

This way at least if you meet me in the street you will not know, I can pretend, keep up appearances. You see I am not my disease.

If you know me you may be one of those who sometimes say "Hi, your looking good".

I'm not my disease. "

This was my very 1st post back in 2007

What I've learnt lately

Listen to my body and don't let others convince me otherwise. This is some thing I have learnt lately.
It was a simple beginning - the physio said "Do not let your pain go higher than a 5 out of 10". Seems simple, it is simple but it has had far reaching affects for me.

Firstly I realized I always push through the pain. How does this help me? It doesn't.
Secondly I allow other high acheivers around me convince me I should keep going. This also does not help me.
So listening to my body has had a profound effect - I feel in control. Yeah! I am not my disease. It is not controlling me. I am only taking pain killers as I need them instead of like clockwork. I am doing positive things to help myself :

• resting or changing activities when the pain gets to a 5


• walking - even for just 10 minutes a day


• going regularly to physiotherapy


• going to sleep at a regular time 'cause it does matter


• not pushing through the pain


• asking for help (to bring in the groceries or cook or whatever) when I need it.


• reading others inspiring blogs ... Living-with-MS ... help autoimmune ... fibro files ... Girl, Interrupted by Polymyositis

I am NOT my disease and neither are you.

A new phase begins

Finally I have begun physiotherapy at my local hospital. The physiotherapist seems good and understands my condition. Today is the first day after my first treatment and I am in so much pain just in 1 leg. I know this is good pain to help the muscle tightness and lateral hip pain in the long run - that is what I am hoping anyway. She did very specific massage in just 3 sore points in my right buttock, laser light treatment and taping. This is all to treat the lateral hip pain. Very early days but I am happy that this treatment has begun. 好