Hello! New Here

[tellybeth]

Hello!  Unfortunately, I am here due to the fact that I have Sjogren's but fortunately there is a place like this for people like us to come and share.  I am a 33 year old mother of a wonderful and energetic 3 year old daughter.  My problems began right after she was born.  I developed extreme fatigue and joint pain and just a general feeling of terrible!  I was teaching at the time and everyday was a struggle.  This began to get worse and worse each day.  None of my local doc's could figure out what was wrong with me.  I also was having unexplained nerve pain in my right hip and leg.  They tried to link the nerve pain and joint pain together so they were stumped.  Finally, in 2007, one year after it started, I was sent to Mayo Clinic in Jacksonville Fl.  I was finally diagnosed.  I have Rheumatoid Arthritis, Sjogren's and degenerative disc disease.  I began treatment for the autoimmune diseases with plaquenil and methotrexate only to have to cease all treatment in Feb this year due to needing spinal fusion for the degenerative discs.  In Nov., I fused!   I was then able to return to my meds after 9 months of no treatment.  I am patiently(somewhat) awaiting my rheumatologist's nurse to fill out the one paged approval form needed to get insurance approval of Enbrel.  Nothing else is working for me.  The RA is in a constant flare and now the sjogren's is worse than ever. My mouth is in a miserable state.  My tongue burns like it has pepper sauce on it at all times.  When I eat, I have tears pouring down my face regardless of how bland the food.  My tongue has begun to crack and it bleeds at times.  The corners of my mouth are so dry and cracked that opening it is painful.  My eyes stay red and burn.  Most days I do good to wear my contacts for about half the day.  This is more miserable and painful than the RA!  I cannot wait to get this under control.  I am glad to have found a place to share and learn from others.  I hate that anyone has to be here but am so grateful that we can be here for each other.  Thanks for hearing my story.
Telly

[wen.uk]

Hi Telly
So glad you have found the group, but sorry you have had to look for it in the first place!!
Did you respond well to the Plaquenil previously?, if so it might just improve things for you when you hopefully start back on it.  My heart goes out to anyone with children who also have to manage with SjS, I take my hat off to all of you I truly do.  I get worn out after minding my 20 month Grand daughter for any period of time, and that's with a lot of help from my hubby too.

Welcome to our little family, I'm sure you will get a lot of support, they are a great bunch of people.

Wen x

[Patze]

HI Tellybeth,

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

I'm sorry that you're having to go through this misery, and having a young child and career to boot, has just got to be nuts!  I don't know how you're doing it, it's all I can do some days is just to get to the office, after that, I'm toast.

Good luck with the Enbrel, and I sure hope that the nurse fills out that form!  Dang, it's nuts having to wait for that to get insurance approval for certain meds (had to get it done for a couple of meds).

Hang in there and I sure hope that you feel better soon!

Take care -

Patze

[Katybarstool]

Hi from me too, Telly. You sound like a very resourceful lady. Would it be posible for you to start with some topical moisturisers while waiting for the prescription? Some things you could try are artificial saliva, eye drops, skin creams. If you use the search box on the home page, you will get lots of ideas of things that can make you more comfortable.

Hang in there. We are all thinking about you.

Hugs
Kathyx

[Scottietottie]

Hi Telly 

welcome to Sjogren's world. Would you be able to try Plaquenil again now? It doesn't work straight away. It can take up to six months. I'm sorry you're feeling so rough - and it's hard bringing up a family at the same time.

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

Take care - Scottie 

[lynnmarie219]

Hi Tellybeth and welcome to Sjogrens World!

I'm sorry to hear that you are feeling so badly right now and hope you can get the meds and treatment you need soon so you can get some of those symptoms under control.

Kathy has a good point when she asked if you are taking any OTC products to help with the symptoms...I would like to add one more that may help with your mouth/lips. When we were talking about things to help chapped and dry lips here on the Boards...someone recommended that I try a Vitamin E Stick...I did and l love it...it has helped my lips/mouth area so much. Its just another suggestion that may be helpful to you... 

I hope you feel better soon......and welcome to the family!

[Bernice]

Hey Telly,

Welcome!

Wow! You do have your hands full right now, but I'm sure in time it all will get sorted out so that you can manage in more comfort. I pray!

Lord have mercy, I mean I feel so bad complaining about my upcoming two week stay with my 3 year old grand.

Girl let me just go on and say this, you are already my hero!!!

My body starts to ache just thinking about my grand coming and here it is you deal with this on a regular?

Do you have help?

Peace & Be Blessed!
Bernice

[Helen]

Hi Telly,

Welcome form me too.  I am new to the site too but you will find everyone helpful.  When you are feeling bad or hurting all you have to do is log on and you feel better.  Sometimes I don't reply I just read.  Some here and very sick and other are just learning how to deal with SJS.  I find reading about others problems makes mine much easier to deal with.  If I have a bad day or am mad about something, post it and get it off your chest.  There is laughter, advise, and compasion offered here and it is real comforting to know we have a place to share and be understood. 

I also have a real problem with dry mouth, my tongue use to hurt and I would get sores in my mouth from the dryness.    I am on salagen which helps alot, but it is still dry. 

I hope you feel better real soon

[Chickpea]

Hi Telly

Thanks for introducing yourself.  My heart goes out to you.  It sounds as though you've had a hard journey here - I do so hope that we can support you and give you what help we can.

Lots of us have found that Plaquenil makes a huge difference to dryness, fatigue and pain - but it does take months to kick in.  I know you've already waited so long for treatment to start so it's going to be especially difficult for you waiting even longer.

Post lots and let us know how you are doing.  Maybe you could tell us a little about your daughter too?  Three is such a glorious age!

Take care - Chickpea