New Member!

[Missie]

Hi to everyone out there!  I am new to the sight.  My husband actually found this sight and suggested I check it out.  He was right! This is a wonderful sight.  It really helps to know I'm not crazy.  I was diagnosed with Reynauds and Sjogrens in August of 09.  Had alot of these symptoms for years before, just no idea that a nasty rash, ear infections, sinusitus could possiblly be related!  Always had dry eyes & mouth, too.  In September of 09 I contracted salmonella and ended up in the hospital for 10 days, & the autoimmunes have gone crazy ever since.  Have seen probably20 docs in past year & a half.  What really bugs me is that they all have their socalled specialty but nobody can put things together.  Until I read some of the posts on this site, I was ready to see a therapist, thinking I was crazy!!!!  I kept thinking that a fairly active, 41 year old woman should not have to struggle to move, as not just my joints, but my muscles and bones ache all the time.  Because of this, I have lost my job, and have not been working for the past 6 months or so.  Husband makes just enough for us not to get any help, so trying to stay positive, but most days even that's a struggle!!!  Any suggestions out there??

[Joe S.]

Welcome to the forum. Some of us have posted what meds and supplements we use in our signature. I use alternative therapies. Toneations is just one. They can be played for free at www.chakraforce.com

If you have doctors that have committed to a DX it is time to file for SSDI!

[Missie]

hi joe! thanks for replying.  I have applied for social security disability.  I have received my first denial and I am in the process of appealing that decision.  I just got a letter yesterday that says it could take up to 30 months!  Its crazy just how long it takes to get help.  They sure don't have a problem taking it out of our checks though!  I went to my rheumatologist yesterday and he had to take me off the plaquenil.  WBC and platelets were pretty low.  Now I'm not on anything.  It's scary to think I could feel any worse than I already do.  I am going to look into what you were talking about.  I'm ready to try anything to feel better!  Thank you so much and take care!!!!

[Joe S.]

I have heard that the 30 month figure is decreasing.

If you are not on D3, start it and Omega-2 Oils ASAP.

Alpha Lipoic Acid and Acetyl L Carnitine will help you in many ways
Inositol will help take the impact of the weather out of your pain cycle.
6-8 oz carrot juice per day will help rebuild endorphins and cut your pain levels.
The toneations on my website can help with a number of related ailments.
www.chakraforce.com

[Scottietottie]

Hi Missie 

Welcome to Sjogren's world. What medications have you been put on and who is your lead doctor? It's not unusual for sjoggies to collect a lot of 'ologists'. It always feels like a minor triumph if one can drop one or two after a while!! (It can happen!)

I hope you find the site useful.

Take care - Scottie 

[Patze]

Hi Missie,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are oodles of topics that you just might find interesting; I know I sure do!

I'm sorry to have to have met you this way, but I'm sure glad that your hubby found us, and you're here!

Come often and I hope that you'll be able to join us in the chat room soon.  You'll find the schedule by clicking on the chat option on the top middle of this page.

Take care of yourself -

Patze

[lynnmarie219]

Just adding my welcome to you as well Missie...so glad to hear that your hubby found us and that you are feeling like you belong here already (not a club you WANT to belong to, but it sure does help to know you are not alone in all of this)! 

Keep coming back and read all that you can here to help explain some of your concerns and questions...and if you don't find what you are looking for...feel free to ask...someone will always be around to help! 

[newhorizons]

Welcome aboard Missy, Catch you tomorrow as it's nighty night time... am interested in reading others post to yours.

New horizons that's also Joy... Each day is a new horizon...

[season]

Hi Missy. Nice to meet you. So sorry you have sjogrens.

Welcome aboard.

[Pisces24]

I had  6 year journey to get a positive diagnosis of Sjogrens.
For lots of the "so-called specialists - for want of a a better word that I can't use here" if you don't fit the textbook, they give you the run around or do the absolute minimum. In my 6 yr journey, I would see one for awhile, then he/she would tell me I didn't need to go back, I'd think I was "cured", then I'd see my gp again who'd tell me my bloodwork was still waaay off and I shouldn't have these symptoms. So, I'd see another one and repeat the same.
My funniest diagnosis was "It's the cat's fault!" and I didn't have a cat when this junk started.

I finally got diagnosed at a teaching/reasearch hospital and I definitely recommend them. If you don't fit the textbook or the norm, they will dig in there to find an answer.  I have three -ologists there = reumey, pulmono & immunol. My 1st visit with my immunologist, I got the head guy, an older intern and a new one. The immunologist was asking the interns questions like this test said this - what could that point to and what test would you run next. What would be the symptoms of that? Etc. They are training the doctors to THINK not to dr out of a textbook. I really felt they cared about me and would/did actively look for a diagnosis.

I am soooo glad you have a supporting husband. Give him a hug from all of us here. Unfortunately when something like this comes up, we run across a lot of people (friends, spouses, signif others, etc) who just don't have the fortitude to deal with it. I guess they only want to have perfect people in their lives and have never looked in the mirror.

Good luck on your Journey!  Great peole at thie site!

[Meld256]

Hi Missie,

I also want to welcome you to Sjogren's World!  You will find lots of friendly and encouraging people here.

First of all, blessings to your husband for finding us! And secondly, no you defiantely are not crazy! So many of us feel that way when doctors cannot put the puzzle together with all our symptoms. Many of us (like me) have found so much great information here on the forum to let us know we are not alone in this, and we are not just nuts. 

I understand how sometimes financial difficulties can make symptoms worse. I have recently been approved for SSDI, but the process was a struggle money-wise. Just a suggestion...now that you have that first denial, hope you get a good attorney to help with the appeal process. They can make all the difference! And that 30-mth. time-frame seems to be getting shorter all around the country.

May I ask if you've also filed for SSI? Maybe that's what you meant about your husband making enough to not be eligible for help. If so, there still may be some community organization that may help? Food stamps or anything? I know it doesn't seem fair when the income is just high enough not to receive help that you need. And when we feel so lousy anyway, it doesn't help.

I hope that we can try to help you find some positives in here somewhere. We all will be rooting for you! Please know that you have many people here who understand and have either been the same road or are traveling it with you.
Take care,
Melinda

[newhorizons]

Hi Missie, As promised last night late...here I am.    Welcome to Sjogren's World!    

I slept soooooooooo good for a change. Rubbed my knees with Voltaren Gel.

Ortho doc gave me some samples and normally is RX strength.It must have helped.

My 40 year old daughter has been diagnosed w/Sjogren's and talked with her yesterday (lives out of state) and she also complained of sore joints and muscles.  Suggested her and you to try heat and cold therapy on body.

At night, I use two cold packs wrapped in coverlets on back and hip area and a heating pad from the lower part of rib cage to neck area.  This has worked for me for a number of years.  I'd rather do something external instead of taking meds.

Joy

[hootyhu1]

Hi Missy,
I am new here too and have been recently dx with sjs. I too was feeling crazy and even now, I can't get a straight answer even out of my rheumy for if I should be on meds still, what's next, ect. So I am just on this journey with everyone else.

My symptoms are joint pain, fatigue and brain fog. the Plaqunil has helped tremendously! I still have bad days but it is no longer going to target for 30 minutes and then napping for 3 hours just to function and with a toddler at home that is just not doable!  I am worried about working. I have been working full time again since we moved just after the first of the year and it is HARD! not to mention my house is a wreck and sometimes my husband just doesnt understand.

I hope that you can find answers and maybe an ear to listen to you.

=hootyhu