Greetings from Finland

[eija]

Hi everyone,

I've been reading the boards for a while now but haven't posted anything. Maybe it's high time to surface?

I'm an IT-geek from Finland, mom of two teen girls and yeah there's a hubby, too. I have three dogs and a horse in my zoo - along with several wooly pooches under the sofas... I also play the flute since I was 7 or 8 years old and love photographing, writing etc.

I was diagnosed with Sj?gren's in July this year and now I'm on Oxiklorin and Prednison, and of course eye drops... I guess my symptoms started with dry eyes a few years back but last autumn I started to have joint aches. In the spring it got so bad that I got fed up with it (and my gp just telling me to pop painkillers for the pain) that I went to a new doc and BOOM a month later I got a diagnosis I had NOT expected. Actually, I hadn't even heard of this disease before last spring/summer.

I looked up an English forum because the Finnish one is a bit quiet. Of course the Finnish medical systems are very different from the American ones but the illness is still the same, so I'm trying to fit in.

I have started a Sj?gren's related blog but it's in Finnish, so probably not many of you could read it 

[slccom]

Welcome, Eija! You are quite right. I, for one, would not be able to read your blog, unless I borrow an elderly gentlemen's Finnish lessons. (I sort of take care of him; he has no family here. He decided that he wants to learn Finnish so that he can visit the land of his ancestors and speak the language. He is 89 and very, very frail. But he is sweet!)

Sorry/glad you found us. I have had Sjogren's all my life, and didn't have real significant diagnostic symptoms until I hit about 50 when my eyes went really dry. Luckily, we live in a world of true miracles, and we have medications that are helpful in preventing the really crippling effects of it and the related autoimmune diseases that love to come along for the ride.

Please, please, please keep in mind that the people on this board, for the most part, are much more ill than you are likely to ever be. I believe that most people with Sjogren's are never diagnosed because either they can't find someone competent or don't have the "right" blood results. Also because they never get sick enough that even a doctor can tell!

Besides tracking your symptoms, you should also track the medications and supplements that you take, their doses and how effective they are. Set up a spreadsheet or something, and after you make an entry, e-mail it to yourself (assuming that you keep sent e-mails) in case your hard drive crashes. Do the same with diet changes.

Since you are having symptoms now, especially joint pain, I would ask about getting on Plaquinel ASAP. It is really cheap in the generic form. Always tell your dentist that you have Sjogren's. The eye drops you use must not contain benzalkonium chloride as a preservative, because it will damage your cornea. You need to have an ophthalmologist, too. Tell her/him you'll be on plaquinel and you need a baseline visual field test. (Actually, if they don't tell YOU to get a baseline visual field test, thank him/her politely, leave and find someone else.)

Beware of the nocebo effect. This is where people who are given placebos but told to expect certain side effects, and they then develop those side effects. My advice is to take the medication, take it with optimism, and if something that distresses you develops, only then look up the side effects. The human mind is an amazing thing, and the power of suggestion even more so. Even worse, many people are more afraid of the medications than they are the disease. This is very dangerous to your long term health and functioning.

Sjogren's is a real trickster disease. There are many different symptoms, and as far as I can tell, no two people with it have exactly the same symptoms. That said, there is no reason why you can't have another illness as well, including other autoimmune diseases. They do like to travel in packs! And that said, there is no reason why you can't have some other illness that isn't autoimmune. When you go to the doctor in the future, ask ?If I didn't have (autoimmune disease/s), what diagnosis would you consider? How can we rule that out?? When the mind heads down a diagnostic track, it is good to derail it with this type of question.

Welcome, sorry you need us, and we all look forward to answering your questions and your answering ours. Don't forget the Social Hour for some fun!

There are a number of us who are musicians. I'm mostly a bass clarinetist, but I play other sizes of them, preferably the bigger the better. Keep playing --it is good for your lungs. Lots of pet lovers, and writers, etc. I have 5 spoiled rotten dogs, one husband and a bunch of mess. I'm working on getting it cleaned up.

I hope the meds work well for you!

Sharon

[Cheryl]

Hi Eija,
Welcome to Sjogrensworld!  We look forward to getting to know you here.
Cheryl

[Joe S.]

Do you use Babel fish? I hope that you can follow this. I do not like to see younger people with this health challenge.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[lynnmarie219]

Hi Eija and welcome to Sjogrens World!

I hope you are able to jump right in here and find some good information, answers to questions, and support when needed!

[Byn]

Hi Eija... Welcome to Sjogrens World.

[eija]

Thank you all for the warm welcome

I'm not the type that panics and sees the worst in everything. Even with this illness I take it as and when it comes. After all, there's nothing else to do. I've studied as much as I've found about this and I know the worst cases are pretty rare so I'm not really scared of getting there. At the moment I'm doing okay, despite the aches, dryness and especially the horrible brain fog and tiredness.

I'm on Oxiclorin (for four weeks now) - I think that equals Plaquenil. Takes a few months to kick in.

Sharon
Funny that someone chooses to study Finnish "just because" But at least there's some challenge to it - only a small population to speak it and also they say it's one of the most difficult languages to learn. I wouldn't think so, I was about 1 years old when I learned it  Say "Terveisi?" from me to your sweet old friend

I used to play the clarinet, too. But it didn't go well with the flute so I sold it. I can also play a little piano and the guitar (just chords to accompany my singing). But all sorts of flutes are my thing. I also have a bigger alto flute but it's a bit heavy and needs a lot of wind in it...

Joe
No, I don't use Babel fish or any other translator, either. Sometimes a dictionary but very rarely. This is my school English, however I get on pretty well with it. Sometimes my English may sound a little impolite but that's totally unwanted and results from not having the "small talk" in my back bone 

I've read the spoon theory years ago and again just a few days ago. It's very good and I've asked for a permission to translate it into Finnish, too. As for meditation and "new agy things" - I'm a born again Christian so those are not for me. Prayer is way better than meditation but thanks anyway And I do have certain vitamins on my daily menu.

Oh, and I'm not that young - 45 so in the range of the "normal" age when it comes to this diagnosis.

Cheryl, Lynnmarie and Byn, thanks