Oh, hello~

[Unicorn]

Today I somehow got back to 65_Redrose's livejournal and a community she was in (she was a CF sufferer who passed early last year) and got to thinking about communities for Sjogren's and other related diseases. I stumbled across you guys here and figured I'd give this forum a go.

I'm 23 years old (going on 24 this year) and was diagnosed with Sjogren's Syndrome late last year/early this year. It started out with me going from being able to ride my bike a mile and a half to and from work every day, and carry that bike up two floors to me not even being able to sit in my computer chair without being in extreme pain. Just walking up the stairs was a challenge for me and I ended up having to move into an apartment on the first floor.

Unfortunately, I ended up in a very bad relationship with someone who cared little for my needs and had to settle for a second floor apartment when we moved in together. This was the point at which I decided that the pain was too much and it wasn't normal at all for someone as young as I am to not be able to live without hurting constantly unless something else was wrong. Sure enough, after a good bit of testing I came back positive for Sjogren's.

My rheumatologist and my clinic have been AMAZING. My doctor is hilarious and plays the same video games I do (World of Warcraft), which is always good for conversations. He's very quick and easy to speak with about medication, symptoms, and other things. I'm glad I have him!

It's sad to say that I've been getting worse, which worries my friends and (new) boyfriend quite a bit. I've recently developed a slight breathing problem that the doctors are hoping is part of my severe anemia and not something worse. I'm also running on about a quarter of the immune system that I should have, so they say, which means I recently had to change my major away from pharmacy tech to avoid potential infections while doing clinic work. My life is currently made up of hand sanitizer and Biotene! I should totally get a discount on those with the amount I go through. We'll see how things turn out at my next visit. It's almost time for another round of blood tests.



I hope everyone's day is going well, and I'm looking forward to speaking/typing with you all! ♥

[Chickpea]

Hi Unicorn

Welcome!  I'm glad you've found us and I hope you find friendship, information and support here.  It sounds as though your doctors, friends and new partner are supportive which is a blessing.

Enjoy getting to know everyone on SjS World and ask all the questions you need answers to.  There's always someone here happy to help.

Take care - Chickpea

[Cheryl]

Welcome to our site, Unicorn!  I like your positive approach.  Best wishes in accomplishing what you want to do in life!~
Cheryl

[Joe S.]

Welcome Unicorn to the forum. I am sorry to hear that your livejournal friend died. There is a lot of information on this forum. Just a side note, is there a way to profit from your time on WOW?

Some of us have put what we are taking in our signature. This would be a good place for you to start looking for things to help you manage. I do not know if you have read "Hitchhikers Guide" but:
Don't Panic - "Feeling Good" by David Burns has a good exercise for managing Anxiety
Breathe - Breathe in "I am", Breathe out "Calm". It is a simple meditation that can help you manage pain.
Be kind to yourself - Please read "Spoon Theory" http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I have to use alternative therapies. Some of them can be found at www.chakraforce.com

Try sleeping with a polar fleece mumps scarf.

[Scottietottie]

Hi Unicorn 

Welcome to Sjogren's world.

I hope you find the site useful. It's certainly friendly and supportive.

Take care - Scottie 

[Unicorn]

Thanks all ♥

My friends have been very good to me though this. We went camping last month when I was back up in Austin and they were nice enough to make sure there was plenty of water and shade for me.

Hitchhiker's Guide is actually one of my favourite reads

The Spoon Theory was interesting to read too. I'm glad you linked me that. It really is very hard to try to explain to people how you feel because you don't physically look sick... at least maybe most of the time. Even my mom had a really hard time trying to grasp the concept of me being in constant pain even though I was outside practicing Poi and Hoop Dancing.

[Joe S.]

Poi and Hoop dancing are interesting forms of exercise. I would guess that most of us older folks would find them too difficult. You may want to learn Tai Chi for later in life.

W.O.W., does that indicate and interest in Anime? I am glad you got the Don't Panic Reference even though I could not get it in friendly red letters. Terry Pratchet's "Disk World" series have provided reading for my oldest and me for years. If you liked the Guide, you may also enjoy "Disk World".

[Unicorn]

Yes! I actually was thinking about starting Tai Chi once I get back to Austin full time. There are quite a few places around where I used to live that offered it.

I actually do enjoy anime as well, though I haven't kept up with it much lately. I used to frequent anime conventions here in Texas and occasionally California when I was in my teens. My boyfriend showed me a few of his favourite series and I recommended some of mine. It's been so long, though and I feel a bit out of the loop. :p

And to answer your earlier question about WoW.. There's really no way to make any sort of real-life profit from it aside from friends. I've meet some really good people that have stuck with me though the years I've played the game. One of which is a med school student who has given me a few bits of good advice on helping to manage my disease.

[Joe S.]

Thank you for your answers. I have a friend that tends to play 12 hrs per day or more. I had hope that she could at least cover her subscription. Another friend loves some sort of flight game (like War Birds). He helps newbies learn the ropes 4 hours per day and gets his monthly fees paid and transport and lodging for the annual convention.