What is Sjogren's Syndrome?

Sjogren's Syndrome (pronounced show grins) is a condition in which the body recognizes its own tissues as foreign invaders and directs war against them.

With Sjogren's the main tissues attacked are the exocrine glands - the sweat glands. The main symptoms are dry eyes and dry mouth but because it is an autoimmune condition the body can attack many other areas besides the sweat glands. It can have more general effects such as fatigue and aching joints or muscles.

Lots of info on Sjogren's Syndrome

Have you ever thought about quitting sugar?

Added sweeteners pose dangers to health that justify controlling them like alcohol, argue Robert H. Lustig, Laura A. Schmidt and Claire D. Brindis, 3 scientists from the University of California. They suggest that sugar should be come with health warnings.
In their findings published in the science journal Nature they say sugar is responsible for 35 million annual deaths worldwide due to changes in metabolism, blood pressure, hormones and the liver.
Have you, like me been thinking of reducing your sugar intake or quitting it altogether? I have found a program I really like:
The 21 Day Sugar Detox gives a step-by-step program, recipes, guidance including daily emails and an online community.

If you experience any of the following you may benefit by removing sugar:

• sugar cravings or carb cravings
• energy spikes and dips throughout the day
• fatigue, lethargy, depression or anxiety
• brain fog, cloudy thinking, trouble concentrating
• hunger that goes from mild to intense very quickly

See what else you get when you join this program all for just $21.00! Click Here!
Why not join me in getting healthier and feeling better?  Let me know in the comments so we can all discuss it as we go.

You can find me here

 

Hi, if you are wondering where I am you can find me at the following places:

 

Good News Network

 

 

 

Sjogren's blog

 

 

Health Zoo

 

 

 

 

 

 

Where I am visiting lately

All the fascinating blogs at

beautiful world photos on tumblr

positive and good news snippets at GNN

uplifting quotes

We are all made up of many parts

Welcome to Disability Blog CARNIVAL # 82 which is titled FIRSTS

Firstly I would like to say that meeting all these people through their blogs was quite an experience.

Winston Churchill said: "Courage is rightly esteemed the first of human qualities...because it is the quality which guarantees all others."

Courage is what all these bloggers have - for speaking out and blogging about the difficult topic of disability and all that goes with it and courage for what they go through. Oh yes, sometimes they make little of it and sometimes they present it with humour or anger but it is still courageous.

Amongst these writers the “firsts” range from putting one’s child into 24 hour nursing care to realising that a blog was a great forum “The place where even the unforgivable is acceptable, where nothing is taboo.” Gonna eat worms

• In her blog, Donna Thompson writes about disability, care in the community and our aging population and has rich material within her own four walls! In this post she talks about many firsts - we “moved our family across the world, my husband retired from the diplomatic corps after thirty-seven years, and we helped our adult son relocate from the family home into a residence with nursing care.”
• it's myositis wrote their first post about everyday life with their muscle disease in Just About Today
• Angry for a Reason tells us how SADIE WON 1ST PLACE FOR BEST RESCUE: but that is only a small part of the story about a caring and intuitive pit bull dog and her owner.
  Oh and a first attempt to do a solo paper and scissors zine, on (dis)Abilities and Activism!
• Paula’s first post, back in 2006, was about her decision that her blog would be a discussion of key issues unique to the experience of "E." (epilepsy) “ issues that create the essence of one's experience with E.”
• Penny L. Richards’ first post at Disability Studies, Temple U. was April 16, 2005 titled “Color into sound” For those who don’t know Temple U is Temple University in Philadelphia, USA, a world of Disability Studies, Geography, and History with contributors from coast to coast. They host this Disability Blog Carnival, the very first of which was hosted by Penny L. Richards was back in October 2006: It was Disability Blog CARNIVAL #1 “ to roundup recent disability-related blogging on a monthlybasis” with so many amazing links to blogs many of which are still going.
• aftergadget said "A LOT has changed since I wrote this first post" : the aptly named Beginning After the End about death and survival “But this blog is not about numbers. It’s about surviving a devastating loss that most people are very sympathetic to, yet few really understand – the loss of a service dog”
• Advocate For Yourself! is a first post of Deanna Williams at Inspired by Ankyolosing Spondylitis” She saw 7 different specialists in 3 months and says “One of the most important lessons I learned throughout my journey with AS is to advocate, advocate, advocate.
• The first post by Survivor at The Fibromyalgia Advocate about starting her blog
• Rheumatoid arthritis stories explains What Is Arthritis?
• Dave Hingsburger from Rolling Around In My Head says in his first post in October of 2006 "This blog is about remembering as well as about imagining" Read more at "There is a Line" "I Will Not Cross" ( in 2 parts)
• Judy at Peace Be With You changed her blog from prose to poetry, and we visit
  her first haiku triptych "Learning Bravery" at this time.
• Health Zoo is full of blogs relating to many different health conditions. The first post was about gift ideas that would help wellbeing.
• The first post at Sjogren's blog is about diagnosis and symptoms of Sjogren's Syndrome.
• help autoimmune where 'What i am Learning' was the 1st ever post in 2009.

So please visit these bloggers and if you have a moment leave a comment on their post even just to say it was the first time you dropped by.

Listening to books - not drowning

I am not sinking in a sea of self pity ( let go of reading, beloved reading, wonderful books) I am listening to wonderful audio books. I am not drowning in despair ( I cannot tell a lie, I did for just a little while) My eyes no longer working as they once did have allowed me to listen. I am rejoicing in audio books - there is a wealth of them out there - and you can listen to them at any time you have a CD player. I am so happy I have found the audio book. ( tinnitus does not stop you hearing)

I have chosen a selection of audio books to sell if you too are interested in listening.

Hosting the Disability Carnival

This is a first for me - hosting the carnival of bloggers. Oh I have joined in once or twice, but never played host.

This carnival is all about first.

I wanted to make this easy to join in. We are such a diverse group. What we all have in common is blogging so I would love everyone to connect in this Disability Carnival with their first blog post. (ordinal number 1: coming before all others in time or order; earliest; 1st: the first post on your site)

If you don't find this appealing then please pick a first to write about from the definitions below:

• 'first things first'
  important matters should be dealt with before other things: I suggest we get our priorities right—first things first
• 'from the (very) first'
  from the beginning: she realized it from the first
• 'at first - at the beginning'
  in the initial stage or stages: at first Hugo tried to be calm
• 'first and last' everything considered; above all else; altogether: First and last, it is important to know oneself
• Synonyms of first: earliest, foremost, inaugural, initial, leadoff, maiden, original, pioneer, premier, virgin

So if this is your inaugural attempt to join in the Disability Carnival what do you do?

Just post here, in comments, the link to your first post ever or the post you have written about first. In your post please link back to here. Let everyone know you are joining in. Thanks. The closing date will be March 10.

Random Thoughts

“He who conceals his disease cannot expect to be cured”

Ethiopian Proverb

Invisible disability

Sometimes it is hard living with an invisible disability. Only my specialists understand and actually call it a disability. I have no walking stick or wheelchair, I have no limp or twitch and to all I look well and fit and maybe just a bit overweight. The receptionist at the physio department does not get it, my kids don't get it and my husband does not get it. Even other people with disabilities do not get it as to join this months disability carnival I was expected to talk about my fave ""things that make the world accessible for us."
I guess the only thing I can say is ramps and lifts, at least they are the only things that make my world more accessible. You see I can walk (though not the same as before and I can no longer dance or get down on the floor with my grandchildren) but if I walk too far or up steps the next day I have to lie horizontal. I have a muscle disorder, a form of muscular distrophy that means all my muscles are extremely weak (some more than others).
I also think my main fave thing of accessibilty is my new laptop as I could no longer sit up at the computer due to muscle pain in my neck and shoulders and jaw. With the laptop I can lie down and connect with others all around the blogosphere and they cannot see me and do not know I am lying down and am in constant pain all over. This is how I become Not My Disease on a daily basis.
Here are the links to the Disability Blog Carnival:
Rolling Around In My Head
Disability Blog Carnival #80 is up NOW!

Wipe the slate clean

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!

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

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!

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!

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

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

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

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

Learning more about Sjogren's

Doing this

Reading this
and

Good News

What I did today

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