new here

[echofuzz]

hi!

i've visited this site a few times, and i've found it very helpful. i decided to join because i know i need to connect with people who can relate to my health issues and such.  it's been a tough year and a half or so, and while i appreciate the support i've received from people around me, i find it frustrating when i tell someone that i've had a headache for the past three weeks, and they respond with, "yeah, i get headaches sometimes, too."  not that i'm looking for a place to whine and complain. i just think it'd be beneficial to me to have people who truly understand what i mean when i talk about the medical issues i have. 

i haven't been diagnosed with SS. rather my rheumy diagnosed me as having an undifferentiated connective tissue disorder (UCTD) with possible SS.  i lack the two most common symptoms -dry eyes and dry mouth- but i have a lot of the "secondary" symptoms -the muscle spasms, headaches, twitching, numbness/tingling in hands and feet, and so on. i also tested positive for one of the two SS antibodies. but technically i'm still in diagnostic limbo. i have a number of symptoms that don't seem to match SS at all, but may relate to some other AI disease/disorder, so i might end up with a dual diagnosis.

i tend to be a fairly upbeat person, but i have to admit that life has been a bit of a struggle since my health took a downturn. on the other hand, having this (these?) disorder(s) has taught me to focus on what i have rather than what i'm missing. in a lot of ways, being unwell for the past year and a half plus has given me a number of gifts: i've learned patience with myself; i've learned to take care of myself; i've learned to enjoy what i have, what i'm capable of, what i know; and i've learned to be grateful, even when things are rough. they haven't necessarily been easy lessons, but i'm grateful for having learned them.

i'm on plaquenil, which helps immensely. really it's given me my life back. i still have symptoms, but they're far less severe. i credit it for my ability to still work and function in my life.

so, with all that being said, i do have some questions, but i'll post them in the appropriate areas later.

thanks to all who put time and energy into making this a welcoming, supportive place.

take care, and hello!
eileen

[kimbo]

eileen,

Welcome and I hope you have had a lot of questions answered. I know when I found this forum it answered a lot of my questions.

When I was 1st diagnosed with SJS, like you,  I did not have the classic dry eyes and mouth.

I t sounds as though you have processed and adjusted to acceptance well. I know we all have our ups and downs in this
journey.

The great part about this forum is we share the same road, were not alone.

I hope you make yourself at home and enjoy encouragements, compassion  and lots of information as you join us.

blessings kimbo                                 

[Chickpea]

Welcome Eileen!

Like you I started with the more 'unusual' SjS symptoms - numbness, tingling, muscle spasms, headaches etc - and I still don't have as severe 'dryness' symptoms as other people.  I started with a diagnosis of MS and ended up here!  Being in limboland can be very difficult but it sounds as though you have found sensible doctors who are happy to treat your symptoms. 

Good to hear that Plaquenil is already helping you.  Did you find the adjustment to it quite straightforward or did you have side effects to cope with?  Are you on any other meds?  What do you take for the headaches?  I find SjS headaches can be so severe that no analgesics touch them.

It's certainly a journey that we're on, as with all AIs.  Like you, I decided that I would welcome the lessons I was learning with humility and gratitude.  I am thankful for all the positive things in my life, for my family and the beautiful world around me, for books and music.  A friend has accused me of being a bit of a Pollyanna, but it works for me and keeps the sadness at bay most of the time.  I'm still working on the other things you mention such as being kind to myself and taking care of myself!  It's a 'work in progress'.

Visit often and let us know how you are.

Thinking of you - Chickpea

[Linda196]

Hello and welcome, Eileen.

Your attitude about SjS and life in general is a wonderful blessing, both for you and those of us lucky enough to have you share it with us. You've learned some valuable lessons, things everyone could benefit so much from...it's just a shame that it takes getting sick to bring out these lessons for most of us.

I'm so glad you have had a positive experience with Plaquenil...it is a very valuable tool in the fight against SjS, as you've so clearly stated.

Enjoy getting to know us, as we enjoy having you become part of our little "virtual home".

[Scottietottie]

Hi Eileen 

welcome to Sjogren's world. Yeah - we can relate!

Take care - Scottie 

[Patze]

Hi Eileen,

Let me also welcome you to the SJS World!  Please do look around as there are just tons of topics that you might find interesting.

I know what you mean about trying to find out what symptom matches which disorder, it's so frustrating!  Like several others here, I also have Hashimoto's, Raynaud's, sleep apnea, and the list is slowly growing.  There are days I just want to pull the covers over my head and make the world go away.  And no, wearing read sparkly shoes and tapping the shoes three times doesn't work either!

Hang in there and take care -

Patze

[lynnmarie219]

Hi Eileen!

I just want to add my welcome to you as well.

If you have any questions...feel free to ask and someone will always try to help you out or at least point you in the right direction! There are always people around here to support you as well so you don't ever have to feel like you alone again.

I know what you mean about people who try to offer comfort but really just end up talking about themselves. With some people...I just think that is how they are and really don't care too much about anyone but themselves....but there are others who do care and just don't know how to deal with the unknown especially when it involves a friend or loved one being ill!

By coming here to Sjogrens World, you don't have to worry about that...everyone here really does understand because we are all on the same journey to some degree and people here do not judge you...and that's the best part of all!

[dbab]

Hi Eileen,

Welcome!  Gosh, you sound a lot like me and where I started with all of this.  In fact, I still have a UCTD diagnosis which doc suspects is lupus/sjs overlap.  I have dry eye but not dry mouth.  I actually didn't believe I had dry eyes until I had them checked with a Schirmer's test and found out.  I really believed that it was normal to use drops a couple of times a day in my eyes.  I do get the neuropathy symptoms as well (the tingling) and headaches.  I also get SCLE and discoid rashes that are more common with lupus.  Plus many other things that pop up from day to day.  I also only have one of the SJS antibodies, the SSA or anti-Ro.

I'm so glad to hear you are being treated.  That is so VERY important.  Plaquenil is great and turned my life around.  I have been on it for a few years now and I would never think about ever being on it and my doc said that I will most likely take it for life which is ok with me.  I also take Lodine which is a NSAID and methotrexate which is an immunosuppressant.

I love your attitude.  You are definitely keeping your chin up!  I try and live "when life gives you lemons" way too.  It's hard at times but you come to appreciate so much more and not take anything for granted.  I'm so glad you found us here.  I don't post too much lately but hope to get back to posting again.  Look forward to more from you! 

[susanep]

Welcome Eileen
I am glad you decided to join. We all understand each other. I haven't posted as much lately as I usually do, because of feeling a bit worse. I have had some time to rest a bit lately. You do sound very optimistic. It is taking one day at a time, and I also have learned to enjoy simple things in life. You will add to our family here. Again, Welcome.

susanep

[jonnell]

Welcome Eileen my 4 year old has sjs but she doesnt have dry eyes either just dry mouth and the rest of the sjs symptoms.  This is a great place everyone is so loving and supportive here.  Good luck my thoughts and prayers are with you.  Jonnell and Jenna.

[Pooh]

Hi Eileen,
Welcome to our family.  So glad you decided to join us and become a member of this great group. 

I'm glad to hear you are having positive results with the Plaquenil, it can be a real life saver.  I hope the start up with it was easy.  Be sure to eat something or drink some milk along with it.  My personal favorite is a couple teaspoons of yogurt.

Take care and come often.  Ask all the questions you need too, that's why we are here.

Hugs, Pooh