Any dancer or physical actor with Sjogrens in this forum?

[Ballerina]

Hello!

I suffer with you. What a terrible experience with those spasms.
Last night I was able to find the books you mentioned from a Swedish internetshop.
I was amazed there are no books in Swedish, yet the disease was named by a Swedish doctor.
I?ve written a book on what it?s like to be a parent of a diabetes type 1-child.
I hope it will be published by someone. Maybe I should write a book
on Sj?grens in the future.

Do you know why you got the disease? I know there might be no answer.
As for me I blame myself a lot, for I?ve done crazy crazy things. Many times
I?ve been performing with hight fevers. And I?ve been working in places
trying to convince people how important art is, like banging my head in the wall,
and receiving no thankyous. I think the last one has been the most stressful and
this is when I started to feel the symtoms really really strong.
(Yet, I have been healthy all my life. I don?t do drugs. I exercise.
I eat good food. I go to bed early...blablabla...)

But when I got ill again this August, I was doing the most wonderful dance project in lappland. It scared me. I would love to think that
if you do things that make you happy and you feel you do things for other people,
then you will stay healthy. You will not become ill. I was sure it was just lack of iron. But it wasn?t.

I feel life is laughing at me. There are so much to think of and to understand now.
I called the reumathologist today. It made me depressed. People in stress.

and then I blame myself for blaming myself. And I think of all brave people, like my son,
and you, who all are fighting for your daily lives.
I guess I just need to be both hopeful, miserable, complaining and fighting.

Again thankyou! Let?s keep in touch.

Ami

[genko_b]

Hi Ami and welcome:

A lot of people here have given you good advice so far.

While I am not a professional dancer, one of the things I do is practice and teach Japanese tea ceremony, and this requires a lot of whole body movement - walking a certain way, getting up and down from the floor using just the strength in your thighs and core trunk, and so on. My form of Sjogren's affects my balance, among other things. The doctor told me that without my tea practice, I would likely be in a wheelchair, as the balance problem is so severe. So you may find that Sjogren's eventually changes how you do your dancing, but you may also find the dancing has given you some tools to help you.

Often the fatigue is the most challenging part of this disease - you get partway through something and simply can't go on. For me that means shorter tea performances, or arranging them differently so I don't have to stress the joints around my pelvis so much.

Please let us know what you find out from the rheumatologist.

Genko

[Dolly Dimples]

  Hi Ami, I see you are now learning fast about Sjogrens..

                                                        In answer to your query as to what causes this affliction, no-one can answer that !

                         All we know is that the immune system starts attacking ones body, and it can attack just about anywhere,

                                                                                             so we all just live in hope!!

                          You certainly sound like an up & go girl, & I'd love to see a book written by you about SS  sometime soon in the future,

                               I too am surprised that there are none available in the country from whence  this man hailed from..
                                                                                                                                     
                                                                    Best wishes  Dolly x..

[Ballerina]

good morning! Ohayogozaimasu!!

I have found out there is a woman my age in Gothenburg who has Sjogrens. She is also new to this.
I practise nihon buyo. But last time I taught nihon buyo to some iaido students I noticed my hands
were so painful that I found it hard to grip the fan. I had no idea about Sjogrens (Lakelimb) then.
I just thought I was catching a bad flu. I love tea ceremony. I sometimes make my own macha.
I learned how to whip it at Urasenke in Kyoto (only 3 classes) My nihon buyo sensei
is Nishikawa Senrei in Kyoto. I think I am the only nihon buyo dancer in Gothenburg.

I am thinking how to work with the fatigue. You must be experts. You have learned
when to give in and go to bed or just try to get on? I am often so tired I could cry.
But when I go to bed I feel like dying. I feel worthless and I worry my husband has to
work too much.

I had a big argument with my husband yesterday. I told him to do some kitchenwork.
He was too tired and I freaked out. I acted like a teenager. It was just horrible.
I even accused him for making me ill... 
My youngest son cried. We are friends now, but I wish to have some calm in the house.
So much to deal with. Who will vacum clean?
I wish we had a butler...

Today is World Diabetes Day. I will sell some hedgehogs to raise money for
juvenile diabetes. What is the symbol of Sjogrens? Do you show people
that you have this, with pins or T-shirts?

Yours again from autumn-Sweden
Ami

[Patze]

Hi Ballerina,

Let me also welcome you to the SJS World and family!  Like the others have said, please do look around as there are just tons of topics that you might find interesting.

I'm glad that you got diagnosed fast, and it's good to see that you have doctors that are on top of the situation.

Again, welcome and hope to chat with you soon!

Take care -

Patze

[Ballerina]

Evening Primrose Oil is what I try!

[JannaLee]

Hello and welcome from me too, Ballerina,

Your posts are very charming, even the one about the fight with your husband.

We all know EXACTLY how you are feeling and understand the difficulty that comes with fatigue and needing to cry with it!

Most sincerely your friend,
Janna

[Ballerina]

Thankyou.
I cooked healthy food yesterday, then got so weak and had pain in hands.
Very frustrating. Had to sit down with closed dry eyes.
I boiled rosemary tea. It tasted wonderful.
Have one yourself!
Rosemary leaves and hot water. Soak for 30 min or so.
Lovely.
I think of you heroes and heroines.
Yours,
Ami

[Billydude]

I was studying to be a dancer as a young man.   I think success eluded me because even back then I struggled with stamina.

[Bernice]

Ballerina,
This is another thing I enjoy about this site, I get to learn more about other's customs and such. You said a whole lot I had no clue about, I think it was some kind of dance you do, right? BUT in the same post you spoke about selling "Hedgehog" for a benefit. Now me coming from the mid south of the USA I would think I would know what that was, after all it sounds like something we oughta have around here. Just what is hedgehog?

Bernice

[Ballerina]

Hello!
Good news, I will se a reumathologist in Nov 27th.
At first they told me I had to wait for 3 months, but as I told them what the eyedoctor said
and what my profession is and that I start a new job on Wednesday and don?t know how to handle it.
I hope my doctor will be a good one!

Hedgehogs are native to Europe, Africa and Asia. Because they have spines allover their backs someone thought they
would be perfect associated with juvenile diabetes. So they made the hedgehog the symbol.

Have a great day. I am tired and I am freezing. :-(
Ami

[JannaLee]

Bernice you are pretty cute!  I'm from Texas and was wondering if a hedgehog is a spiny version of the armadillo?

Ballerina,

You don't sell live hedgehogs, do you?

Janna

[Ballerina]

No no the hedgehogs are cute soft toys...
They are close to echina?? in Australia.

Ami

[Virgi]

Hello Ballerina !

I found your post - and would like to know how youre coping ?
Ive always loved dance - all genres - will probably be taking some dance lessons soon and would appreciate input on dancing from you-

Thanks!
By the way I found a list of famous people with autoimmune disease on google search

http://community.wegohealth.com/profiles/blogs/famous-people-affected-by

[divingdancer]

Hi Ballerina

Welcome to our little community.  I was diagnosed just about a year ago.  I was diagnosed with Fibromyalgia before that .  I'm 50 and spent 25 years either as a student ballet dancer followed by teaching.  I used to love teaching children ballet but had to give up 12 years ago as I was diagnosed with cervical spondylosis and found the teaching too hard.  I was very hands on and kept fit up until then.  I also had osteo-arthritis which led to a knee resurfacing operation in 2006. I went down rapidly from then. 

I HATE not being able to dance.  My body itches and twitches when I hear music and I long to be able to plie and grand battement to my hearts content.  Now, I couldn't even do a full plie in second.  My wonderful balance has gone.  Oh for those days of wonderful long adagio's.  I can't even stand on  my own two feet for long without needing to sit down.  To think that I used to stand up teaching for 7 hours every Saturday.

Now my life is lots of aches and pains and dry eyes and mouth,nose. 

I changed my career and am now a Solcitor (Lawyer).  It is tiring in its own way but I can sit down a lot which makes the day easier. 

I'm in the UK .

Divingdancer (Amanda)

oh the diving part is because I used to love scuba diving.