I'm not my disease

Wipe the slate clean

2011-12-31T16:06:00.000-08:00

YEAH! It's a NEW YEAR!

What would you do if you had no pain or health concerns, no money constrictions?
Think for a moment...
What do you really want to do?

AHHH! I've turned into my grandmother!

2011-12-28T01:22:00.000-08:00

I wake up every morning and the first thing on my mind is a cup of tea.
I walk down stairs, get out my painkillers and make a delicious cuppa.

When I was a child and I stayed over at my grandmother's house, I use to think it was peculiar that anyone would get up and take painkillers before the day even started.

As a child I had no concept that pain was something that you could awake with every day. I had no concept that there were conditions that caused you to be in pain. I wish I had asked my grandma why she took them so I would know what pain it was? I often wonder, as I take my painkillers every morning, if she had the same pains as me?

Tinnitus embarrassing teens

2011-12-26T14:17:00.000-08:00

I'm not much fun at parties

Apparently I talk really loud at parties according to my teenagers. That is caused by the constant ringing in my ears. (It is really embarrassing to teenagers who don't give a damn that you have tinnitus or that they may get it soon if they keep listening to loud music on earpieces)
Standing at parties, in the festive season, increases my pain. You are not a very good party guest if you are in pain.

Sitting for too long at parties makes me really stiff and I cannot get up out of the chair. This is not a good look in one so young; it seems to be accepted in frail 80 year olds but not young robust people.
I end up being the kitchen staff as constant doing and moving works best for my body. If I join in a conversation it is not very long before the pain makes me need to move on and I look quite rude and uninterested.
I use to love to dance at parties but now know that if I do my pain will be extremely bad for 3 days after.
I and many others in pain, may be the one offering you the hors d'oeuvres, making a pleasant comment and moving on. But only if the plate is not too heavy!

2011-12-20T16:38:00.000-08:00

I started this blog back in April 2007 when I did not know the full extent of what was wrong with my body. I was searching and angry. So what has changed??
I am rushing out the door to do a hundred things for Christmas but will be thinking about this so I can post it here. In the meantime I hope your Christmas is not too hectic and you get to share the love.

Disability Blog Carnival #77 is up NOW!

2011-11-27T03:14:00.000-08:00

The question is who inspired you?

in·spire
1. to fill with an animating, quickening, or exalting influence: His courage inspired his followers.
2. to produce or arouse (a feeling, thought, etc.): to inspire confidence in others.
3. to influence or impel: Competition inspired her to greater efforts.
4. to animate, as an influence, feeling, thought, or the like, does: They were inspired by a belief in a better future.

I am inspired by that person who is worse off than me and who just picks themselves up and gets on with it. The homeless guy selling 'The Big Issue' Magazine on the street corner in Sydney, Mahatma Gandhi who stuck to his ideals even when imprisoned, those who endured physical and mental and spiritual hardship like those at the concentration camps of Auschwitz. I suppose the theme here could be perserverance through adversity. 'Life is 10% what happens to us and 90% how we react to it.' Dennis P. Kimbro

Psychiatrists believe that Who inspires you most suggests not only what you are able to acknowledge within yourself, but also the scope of vision you hold as possible in your own life. From an article by Matt Laughlin.
I suppose the people who inspire me encourage me to perservere and carry on because I realize the difficulties that people endured are much more severe than the physical grumblings of my body.
Disability Studies, Temple U.: Disability Blog Carnival #77 is up NOW!

Coping with disease

2011-11-08T11:49:00.000-08:00

Most people would not cope with what I cope with on a daily level. They attend the doctor for a sore ... (Fillin the blank). I am sore all over. My stomach does not ache but that is about the only part. My breasts do not ache but the muscles above them do. Occassionally I feel the anger about my situation bubble to the surface but what does that achieve? I already attend every kind of doctor known to man and have searched for many years for help. I mostly accept this is my lot. It is a sad kind of acceptance.

I'm not alright

2011-11-03T01:52:00.000-07:00

Sometimes I get so sick of pretending that everything is alright.
How are you? Good, good, How are you? Good thanks!
Well guess what I am not good. I am in constant pain and living on pain killers and still I feel pain and sometimes I can't even walk up the stairs and my hips ache all the time and the muscles in my upper arm are swollen, my eyes are dry and my tongue is burning, I drop things, I can't chop the veges without difficulty and everything seems like a struggle but I go on pretending that everything is alright.

Why? Because people do not want to know.
Who am I pretending for? My family, especially my kids and my mother.
Hi, how are you? Fine thanks for asking.

Eye check

2011-10-28T20:36:00.000-07:00

I have a healthy macular, at least in my right eye. Because of Adies Tonic pupil in my left eye the camera could not see into it and the photograph was just grey on the screen. This was quite a shock in contrast to the orange image of my right eye next to it.

My right eye is aching alot lately and I am not sure why. Just another thing to go to the doctor for.

I have also found a place called Pupillize where there are quite alot of others with Adie Tonic, apparently we are all one in a million.

Lately

2011-10-03T15:51:00.001-07:00

Learning more about Sjogren's

Doing this

Reading this
and

Good News

What I did today

2011-09-11T03:20:00.000-07:00

learn share help sweep cook visit smile kiss ask answer listen search find clean iron give away grow phone talk hope wish drive write read

"Changes, changes everywhere..

2011-08-17T15:31:00.000-07:00

but if you just sit and stare...
you stay the same!" Children's song often sung on PLAYSCHOOL

Well I know I don't want to sit and stare and change is a constant. I have embraced the changes with only a few stamping and 'angry' days. I think I have done well but there is no one to praise me. So well done me!
I actually enjoy my new limited life and am constantly busy (mostly on the internet) and usually feel there are never enough hours in the day and still lots of things I would love to acheive. I am thinking of an ebook, some ezine articles, a children's book including the illustrations, some online education with "proper qualifications", modifying yoga for chronic pain sufferers, finishing a guest blog, painting a picture, etc etc.
I got momentarily sad this week when the specialist told me there was something wrong with my heart, because there is so much more I want to do. Okay it use to be dance and party and walk and travel - all things with my kinesthetic loving body (do you know about types?) - and yes I use to be a dancer but now I love my changed life. After all who wants to stay the same. So embrace the changes and by the way CONGRATULATIONS and WELL DONE to all you have done regarding not being defined by your disease. Please leave me a comment cause I would love to hear from you.

The nicest complement

2011-08-14T00:01:00.001-07:00

You may not know that I also write for GNN Good News Network which is a positive news site about uplifting topics. Someone said the other day that whenever they wanted to feel good they went there - I know this is what we hope to achieve with the site but it was just so lovely to randomly hear it from someone.

Pass on a genuine complement to someone because it does have a good effect.

What disease?

2011-08-02T02:44:00.000-07:00

Or I should say what diseases; and yes they do cause me dis - ease.
The thyroid disease was diagnosed first - Hashimotos Thyroid which is low thyroid or hypothyroid caused by the immune system.
I discovered I had Von Willebrand's next. It is a bleeding disorder that involves the blood clotting factor 8. Then I was told so many times I had Fibromyalgia.
Next came Sjogren's Syndrome due to the dry eyes and mouth.
Last, and I truly hope it is the last, is Polymyositis with Arthritis.
So now you know my diseases but you also know my attitude is that these conditions are not all there is to me they are only a very small part.

Are you buckling under stress?

2011-06-21T15:16:00.000-07:00

One of many versions of The Scream, painted in 1893 by Edvard Munch

Well there is a test, or many, if you would like to try one.
The one I did is free and takes about 4 minutes and you get the results straight away and you don't give your name or sign up.

My overall emotional well-being, on a score of 1 to 5, is 3.44 which says I am stressed, almost very stressed.

The Quality of Life Score measures my satisfaction with life, including overall self-esteem, health, friends, family and work. 2.9 extremely stressed.

The Symptom Distress Score which measures my symptoms of depression, anxiety, and hostility says I am well adjusted - 4 out of 5.

The Level of Functioning scores how well I get along in the community. 3.63 which says I am very stressed.

Apparently, Behavioral Health Concepts, say I would benefit from short-term counseling with a professional counselor and that "proper rest and exercise, relaxation strategies, and religious faith" also contribute to emotional well-being.

What this all says is while I am not my disease it obviously has a big effect on my stress levels because it is the thing in this whole measuring that I can deal with but not "fix" (I have an incurable disease).

Personality Test

2011-05-25T02:04:00.000-07:00

Today I found out how the Myers-Briggs personality test rated me. I was INFP - Introverted iNtuitive Feeling Perceiving - and in good company too - J.R. Tolkien, Albert Schweitzer, Audrey Hepburn, George Orwel and William Shakespeare to name but a few fellow idealists.
INFP's try to make the world a better place, are truly interested in others,often put the needs of others above theirs, always want to be growing in a positive direction, are creative and inspirational and dislike dealing with details and routine work. The list goes on and on and also suggests careers of Writers,Counselors, Social Workers, Teachers, Psychologists, Psychiatrists, Musicians and Religious Workers.

Interestingly I have been a teacher for over 20 years and at university I studied social work, psychology and ancient indian religion. I also love writing for my blog and website.

The Myers-Briggs is a test which combines Carl Jung's ideas of personality types of Extraversion - Introversion, Sensing - Intuition, Thinking - Feeling with Isabel Briggs-Myers idea of Judging - Perceiving.
I answered the 72 yes/no questions quite quckly without much thought and got a score straight away.

PAINTING is of Shakespeare's play A Midsummer Night's Dream. It is Titled: "Oberon, Titania and Puck with Fairies Dancing" by William Blake. c.1786 from the art history archive.

You see, you cannot see.

2011-05-03T03:54:00.000-07:00

This is not my disease - it does not belong to me - I'm not my disease

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.
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.

Oil on canvas by Portrait of a Blind woman by Diego Velázquez

Disease by Dean Rands

2011-04-12T15:09:00.000-07:00

It tears me apart to say the words
To think the truth for just a second
Because then it's real - not a lie
And I'll have no choice but to forever cry

But still it's something I must face
And I must fight - win or lose
Because it's there - inside of me
Hidden in my skin - hard to see

I'm truly scared of what could be
Of what lurks beneath my skin
It may be hard for you to know
Thats because I cover it with a show...

Please read the rest of this 18 year olds poem here at a poetry community site called Poems and Quotes.
P.S. Dean. I tried to find you, even tried to register so I could get your okay but could not??? Hope it is okay?

A great lady once said:

2011-03-19T03:27:00.000-07:00

“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?

2011-03-12T22:26:00.000-08:00

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

2011-02-07T03:11:00.000-08:00

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

2011-01-23T13:34:00.000-08:00

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,

2010-12-21T19:02:00.000-08:00

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

2010-12-04T20:22:00.000-08:00

"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

2010-11-09T13:30:00.000-08:00

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.

2010-11-02T02:15:00.000-07:00

"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

2010-08-08T23:42:00.000-07:00

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

2010-07-15T14:21:00.003-07:00

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

The wheels turn slowly

2010-06-23T00:28:00.002-07:00

Yes, I have a diagnosis, of sorts - inflammatory myositis...possibly polymyositis but I am still in limbo land. The prednisone - 1st line drug in myositis and many other autoimmune conditions - did not work according to my rheumatologist. I'm not sure if I agree as the large muscle mass above my right knee has miraclously disappeared after years. The rheumy did not know this and she went by CPK and muscle strength and muscle pain which had not changed enough.
(The prednisone had side effects even after 2 weeks - my eyes were a bit blurred and dry, I could not get to sleep for hours, I was very hungry all the time and on the last few days my hair seemed to be falling out more than normal)

So what did she recommend? Pain medication, which I have been living on for years and physiotherapy. My problem is I still cannot get into physiotherapy at my local hospital and I am still on the waiting list. This is very frustrating to me as after having a muscle biopsy and being given a diagnosis I am still not doing a thing different than before my diagnosis. Well I suppose I am doing one thing which is to learn a bit about Myositis and contacting others who have it. Please comment here if you do also have one of the forms of Myositis as I would love to hear from you.

Finally Diagnosed with Myositis

2010-05-24T15:00:00.000-07:00

Finally Diagnosed with Myositis OR No I am not Crazy.
I overcame my fear of a muscle biopsy (due to a bleeding disorder) and have finally been diagnosed with "inflammatory myositis" - which is a muscle disorder with all of my symptoms - muscle pain, muscle weakness, swollen muscles, difficulty swallowing etc etc etc. It affects the muscles closest to the body - upper arms, thighs, neck, shoulders and makes them ache and tire easily. It is an autoimmune condition, a connective tissue disorder and comes under the heading of neuromuscular disease.
My new rheumatologist was the person who diagnosed me but it could have just as easily been a neurologist ( Goodness knows I have seen so many! )

So the moral of the story is Never Give Up. Fight for yourself as no one else will. Do not accept the doctors who tell you 'it is in your head', 'it is menopause' or 'just your age' or 'because you are putting on weight' or 'just mild fibromyalgia' or 'you are not taking your thyroid meds properly' or 'if it was really bad you would be in a wheelchair' or 'just take these tablets' (and now these, and these and more of these). Only you know your body and your symptoms. Some times I started to think I was imagining it and I was going crazy.
I am pleased to finally have this diagnosis but will also fight to get better as I am Not my Disease.
P.S. I could name each doctor and what they said but "you know who you are"

LINKS : Facts About Inflammatory Myopathies (Myositis)

Myositis Directory

Current symptoms

2010-01-01T18:19:00.000-08:00

Just a little review of my current unexplained symptoms for my own personal records. This seems timely as it is the first day of the 11th year with some of these concerns. The last symptom on this list is the very first one I had. I realise that most of these are subjective which makes diagnosis difficult, especially when doctors want to see results.

Tingling

lips - left side

chin

toes of left foot

arms - both - vague

Aching

shoulders

hips

ankles

wrists

Pain behind right eye with pupil staying larger than left eye

Tinnitus - ringing in ears

Pain on use eg computer hurts arm, chopping veges hurts arm

Headache in temples

Slight sensitivity to light

Stiffness from sitting

Feeling of heaviness in limbs

Weakness in muscles of upper arms and thigh

Feeling that muscles will not relax

I am a work in progress

2009-12-27T14:52:00.000-08:00

(Grieving for the loss of who I was.)

The 5 stages of grief

DENIAL: At this stage I am unwilling to accept the truth. "I will soon awaken and it will all have been a dream - this is not happening to me - I can still dance, do my work, chase my children."

ANGER: I feel angry and may need to opportion blame. "Why me?" (in an angry voice) "It is there fault, they did .... , it made me stressed and that made me sick"

BARGAINING: "Maybe this will work. If I try this diet, remedy, religion etc and I will feel better and maybe it might even go away"

DEPRESSION: "I feel I cannot cope, there is no hope, it is all too much, there is no one who cares and no way out"

ACCEPTANCE: "I don't like what is happening but I have some level of acceptance - I can get on with my new life, it is a different life and I can cope."

I don't hold to the idea that we work through these stages in a linear way. I go back and repeat some of the stages sometimes on a daily level. That is what it is like for me dealing with chronic pain.

I think when I started this blog I may have been in angry denial - this is not my disease, take it away, I do not want it. It sounds like it could also be acceptance - that I do have a disease but it will not define me.

We are all a work in progress.

Thankyou jackiee1970 for photo

open your eyes

2009-12-12T12:26:00.000-08:00

Every night when I walk up the stairs in the dark it is as if someone has but a blind fold over 1 of my eyes - just 1.

I don't quite understand this phenomenon even though an opthalmologist has given me a name for it - Adie Tonic Pupil.

Sometimes in a semi dark room you can see that 1 pupil is large and 1 pupil is small. Always the right 1 is large and I'm not sure if that is the eye with the Adie or the left 1.

What I do know is that when I got that bad migraine last week it was a pain behind my right eye and my right pupil was enlarged.

I also know that it is an autonomic nervous system sign. The ANS is like a control system and is involved with heart rate, digestion, respiration rate, salivation, perspiration, pupil, urination, and sexual arousal.

Links:

Holmes-Adie syndrome at Washington University Neuromuscular

HealthLine

Adie's as a manifestation of Sjogren's Syndrome

Pain pay off

2009-11-17T14:36:00.000-08:00

There seems to be a decision when living with chronic pain. How much do you put up with the pain? How much can you distract yourself and what quality of life do you have?

When I take medications (and I have taken Topamax, Endep, Lyrica to name a few) there is always a pay off. Usually part of me, the part that relates to others, disappears a bit. Sometimes I get new symptoms like weight gain or I can't think clearly and I wonder is it all worth it. At the moment I am not taking prescribed drugs for pain and have coped for about 6 weeks using over the counter pain killers. I start to wonder what is worse - the effects of prescribed drugs or panadeine, codeine etc. Then I wonder about quality of life as I can't seem to judge if I am better off.

I want to talk to my pain specialist about my pain treatment options, maybe trying TENS or something else but the way I am feeling today just GIVE ME THE DRUGS.

P.S. I am also very frustrated at not being able to talk to anyone or make an appointment for 3 days with the pain specialist. I find this totally unacceptable for people living in chronic pain. Don't you?

IMAGE Thanks to UnderworldStargazer

Ningling and Tumbness

2009-11-15T02:56:00.000-08:00

My symptoms are so distinct tonight i thought i better record them.
Tingling and numbness are not new to me - just the pattern of where it is.
A new symptom - tingling in just the left side of my tongue goes now together with tingling numb feeling in all my left fingers and all my left toes. At the same time the night sweats have come on very strong - i am someone who never use to sweat .
Also the pain and bubbling in both my calves is severe. The neck pain and shoulder pain has not subsided for 3 days. It usually weakens overnight.
i know this all sounds a bit depressing but i am still here banging it out on the computer.
Today I had 1 coffee and went for a nice walk.

Good News No shoes

2009-11-12T20:55:00.000-08:00

Some days I am only good for sitting on the computer to distract myself.

I don't want to bring myself down so I look for humour or good news.

I often visit the Network for Good to see positive news updates from around the world or Good Giving which allows me to help others, and not focus on myself, right at my computer. (There is always some one worse off. As my father use to say "I thought I had it bad 'cause I had no shoes until I saw a man with no feet"

Thanks JMeganSnow for the art

Listen up.

2009-11-02T14:40:00.000-08:00

There are a thousand chirping birds in my head most nights - in the day they reduce to a high pitched group of crickets singing in unison. I am a nature lover but this is ridiculous.

Some people might think it would be lovely to listen to these constant companions but I wish they would get out of my head and leave me in peace and quiet. They are sometimes so loud it is difficult to hear other things like what the children are trying to say to me.

I think people who have tinnitus may become lip readers without really knowing it. I noticed this when a new doctor was speaking and I had to work really hard to listen as I could not read her lips - she had a strong accent which makes lip reading difficult to the novice. I have only had tinnitus constantly for 6 years now. It is just added to my list of symptoms and no doctor (in the many that I see) has ever investigated it further.

To tell the truth it is only really annoying on those nights when I cannot get to sleep easily and I lie there listening to the sound of a thousand chirping birds...

(BREAKING NEWS: Henry Ford Hospital offers hope to the more than 50 million patients with tinnitus. )

Oh Night Divine

2009-04-25T22:57:00.000-07:00

Can you remember the feeling of waking in the morning after a good night's sleep and feeling so good - you feel rested and have not a pain in your body. Well that is a very rare feeling for me and hundred's of others who suffer from chronic undiagnosed pain.
Better sleep is not about getting a better mattress, no matter what the salesman or The Better Sleep Council brochure will tell you. It also says on the brochure that a good night's sleep is essential for your mental health, your emotional health and your physical health and "If you think you are suffering from a serious sleep problem, such as insomnia, sleep apnea, narcolepsy or restless leg syndrome, consult your doctor or a sleep specialist" It does not tell you that your doctor may just add these symptoms/conditions to your already large list of symptoms and do nothing about it. If you think I'm angry, I am. I just want a good night's sleep...well that's a start anyway.
Apparently what I have is not life threatening - according to my doctors - I have no liver problem, no heart problem, no kidney damage (all the pain killers may have something to say about that soon!) so just give me something to manage the pain.
But I digress - the pain specialist - who is treating me as if I have fibromyalgia, as no other diagnosis has been offered, says all my symptoms may just be due to sleep deprivation. So did any one order a sleep study??? No one ever checked for tender points either!
See previous post 'Go To Sleep' Tuesday, May 1, 2007
I am not my disease - I have a life. (but it is getting smaller) Oh Sleep Divine.

PAIN

2009-04-01T15:41:00.000-07:00

Note the capitals - PAIN, chronic pain is a strange thing. You start to live with it, you cope with it, you manage it but you do not see it is slowly changing your life. You stop doing certain things...maybe not going out at night or getting someone else to do the shopping, sitting more, exercising less...whatever. It is insidious. Then one day we have had enough and we try a new doctor, a new drug. We need to try other things but it is hard to think clearly when we are in pain and just trying to get through our day to day existence. I will try and place here links to things that help us - those in chronic pain. Maybe you could post something that has helped you.

I am going to try

yoga
massage
emu oil
hot baths

See more info on pain and a brief history of pain

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer,

Woke up this morning and I wrote down this song

2008-08-14T21:47:00.000-07:00

I wish.
Woke up this morning with that old friend - cramp in the foot that does not go away for hours. This is being written for the 'Forget No Symptom Project' so that the next neurologist will get to know all symptoms a little better. (I hope) The FNSP was commenced on June 24th, 2007 with Thyroid but continued with more fervour on Friday, June 6, 2008 with Electric Lady Land

Back to this morning, before I forget. Once this cramp comes it is also followed by imbalance of a somewhat mild nature - the dentist barely noticed that i was walking like a drunk - and clumsiness ( i only spilled 1 whole cup of coffee on my sons school pants while he was wearing them and while he was on his way to school).

The other addition is the sloppy ankle feeling. Don't know how else to explain this. Will the doctor know what i mean? any help from others suffering from sloppy ankle would be appreciated. Thank you.

Woke up this morning and I wrote down this song just can't remember who to send it to. Thank you James Taylor

Where 2 ?

2008-07-31T03:29:00.000-07:00

What is required? what is needed? The 7th specialist is sending me back to the 4th specialist! He did not have any answers then so why am I to assume he would have any answers now.?
The pain behind my left eye, the one that kept me sleeping upright for 3 months is coming back, otherwise I would not be looking for where 2 go. Yes I am on the medical round a bout - I can feel it starting to spin me now. Pain is a strong motivator but where 2?

Electric Lady Land

2008-06-06T06:51:00.000-07:00

That's what I call myself when I get this particular set of symptoms (- it's what some call my weird sense of humour to make light of what is happening.) I feel electric all over but really it's just in my arms and legs and lower face particularly mouth, tongue and jaw.
I lie in bed going crazy with this tingling, burning feeling, combined with loud tinnitus and pain in my upper legs like the circulation is blocked off. It is on both sides of my body. There is also pain in my upper arms. Getting up and walking helps. I try to distract myself with the computer but sitting still is hard as the pain burns in my toes and calves and thighs - electric burning all over. Why do I never have these symptyoms when I see a doctor? I am writing them down now so I won't forget how to describe them. The endep does not help and I have taken twice my normal amount.

Good News keeps the news moving!

2007-07-21T02:14:00.001-07:00

Steve said...
What a good idea, this can be interesting and grow,good news keep the news moving!

1:54 AM, September 23, 2006

Let's check out what good news, positive news has been in the mainstream news of late.
By mainstream I mean your local newspaper, your radio news and your television news - ABC, BBC, CNN etc
Please post any good news items you have seen or heard in the news lately.

Go to sleep

2007-05-01T16:52:00.000-07:00

Or should I say turn out the lights and go to sleep.

Years ago I remember reading that the sleep you get before midnight is the most important sleep. (This probably came from an ancient indian script knowing my earlier life)

More recently there was a news report linking cancer and sleeping with a light on or even sleeping in a room with a street light on outside it all night! (Is this getting too weird for you? Well here is the medical link: Schernhammer E, Rosner B, Willett W, Laden F, Colditz G, Hankinson S (2004). "Epidemiology of urinary melatonin in women and its relation to other hormones and night work.". Cancer Epidemiol Biomarkers Prev 13 (62): 936-43. PMID 15184249. )

There is also the Melatonin connection much mentioned of late. Got me thinking about one of the first doctors I saw in 1999 and how she said a lot of my symptoms could be explained by sleep deprivation - muscle pain, poor concentration, poor memory, irritability and fatigue. Had my children trained me to be a light sleeper? No one has ever ordered a sleep study to be done on me. Some doctors have queried if I have had one done.

I snore quite a bit especially when lying on my back
my legs often jerk
I talk on some nights.

I feel this needs more investigation but "I am not my disease - I have a life."

Sjogren's Syndrome

2007-04-26T22:51:00.000-07:00

That is pronounced Show grins but I must say I don't have many grins to show this afternoon. Afternoons are usually the worst. I start the day positively and with lots of energy - well the most energy I have all day - but by 3. 30 I'm very tired. The rheumatologist says that is Sjogren's. Not many people know of it but it is quite common as far as auto immune diseases go. Trouble is most people do not get an easy diagnosis until after they have it for quite a while - 7 years it took me. Why? Well with me it was because the symptoms most doctors associate with Sjogren's were not my worst symptoms. Yes I had dry eyes, Yes I had a dry mouth. Yes I had more dental cavities. Yes I had dry skin. I did not go along giving these sypmtoms as they seemed minor to me compared to the muscle aches and the burning tingling in my hands, arms, feet and calves. But dryness is the main sign that doctors take note of to head them in the right direction. The version of SS I have comes with a neat little set of MS like symptoms just for fun. (Please note the sarcasim) If you want to know more about SS go to www.ratesites.zoomshare.com
This is not my disease - it does not belong to me - I'm not my disease
The rantings edited from what is going on inside my head about what is going on inside my body at any particular time.

Adie tonic pupil

2007-04-25T05:26:00.000-07:00

I am not my disease.
I have adie tonic pupil. It is just another annoying symptom. No one tells me why I have it. They just make a note of it. What it means is that in the dark I cannot see properly out of one eye. It is not life threatening it is just annoying. I did not always have it - it arrived about 2 years ago - before I was diagnosed with SS. It sent my opthalmologist into a spin - what with that and the eye pain. He ordered an MRI of the brain straight away.
This is just a reminder to myself from eMedicine Anisocoria "The combination of an idiopathic tonic pupil with decreased deep tendon reflexes and/or orthostatic hypotension is termed Holmes-Adie syndrome. The symptoms of a tonic pupil tend to be self-limited. Aide pupil is believed to be idiopathic or viral in etiology.
Other causes of a tonic pupil include neurosyphilis, diabetes, herpes zoster, giant cell arteritis, and alcoholism." from Author: Richard Gray, MD, Assistant Professor of Clinical Emergency Medicine, Director of Undergraduate Education, Department of Emergency Medicine, University of Minnesota Medical School, Hennepin County Medical Center

Thyroid

2007-04-24T18:47:00.000-07:00

I have an underactive thyroid.
It is called Hashimoto's thyroiditis (also called autoimmune thyroiditis and chronic lymphocytic thyroiditis). It is a chronic inflammation of the thyroid which is a condition of the endocrine system. That's why you visit an endocrinologist for thyroid concerns.

It means that the thyroid is attacking itself and making itself slow down.
I take 2 tiny pills every day and I have for many years. It is no big deal, except for when I travel as 1 of the tablets has to stay cool. One tablet is replacement thyroid hormone T2, the most commonly taken drug for the thyroid, and the other is T3 - tertroxine. This is taken as my thyroid needs extra help to absorb the T2. The thyroid causes many symptoms which can be confused with other diseases but it is suppoesedly easy to diagnose as it shows up in a simple blood test.

Jig saw puzzle

2007-04-24T18:27:00.000-07:00

Things are not absolutely clear - as a matter of fact I feel like it is a large jig saw puzzle.
I know I have a thyroid condition. The endocrinologist said all my new symptoms were not caused by my thyroid - that my thyroid was being treated with the medication - T3 and T4. That sent my G.P. and me on a search for what was the cause of all these aches and pains and muscles that would not relax. (Just to name a few symptoms)

Many times I have heard that people have taken many years before getting a diagnosis. Any way all the pieces of the puzzle are not in place yet - that is how I feel. It is very frustrating to spend so long doing the jigsaw and only to find a few small pieces are missing. Do you know that feeling? Are you a completist? The choice is , I suppose , 1. to let go and walk away or 2. to search very carefully and methodically for the missing pieces.

I'm not my disease

2007-04-20T22:50:00.000-07:00

This is not my disease - it does not belong to me - I'm not my disease

The rantings edited from what is going on inside my head about what is going on inside my body at any particular time.

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