Hello From NJ

[MissyLouWho?]

Hello everyone!  My name is Melissa and I am a 35 year old married mother of three little girls  .  I have been searching for 3 months (actually it has been years but no one ever found anything) for what is wrong with me.  I have all sorts of issues ranging from heart (sinus arrhythmia, bradycardia, pvc's, and 2 leaky heart valves) to neurological to blood to muscles and joints.  And of course the depression...

I got blood test results yesterday that have me really confused and worried (Labcorp sent me a copy of the results).  My Sjogren's ss-b came back high, and so did other tests.  I won't see my doctor for another week and she said there is far too much to go over on the phone and that I would have to wait until my appointment to discuss them with her.  So I am here to try to find out some answers.  I do have dry eyes and mouth; always have.  I just thought it was because I never really get too thirsty often.

Autoimmune diseases run in my family.  My mother has lupus, and her sister (my aunt) has Sjogren's.  There are so many other things (too many to list) in my family too. 

Just looking for some control in an 'out of control feeling' situation, and knowledge gives me that peace  of mind and control I really need right now!

It's very nice to meet all of you 

[Katybarstool]

Hi Melissa

Welcome to the family! Isn't it cruel when you have your results, but can't have them interpreted? I hope your appointment next week is more enlightening.

It does sound as if you belong here, but I wondered whether you could have a good look at the boards - and maybe the research articles that you can access from the home page. That way, you have a better chance of being prepared for, and making the most of, your appointment. next week.

You lucky lady - three little girls. I always longed for a girl, but had three boys Now they are grown and have their own children. Finally, we have two little girl grandchildren - and two boys of course!

Kathyx

[Joe S.]

Welcome. Management is key. You need some understanding to manage. I suggest that you start by reading "Spoon Theory". Don't Panic. Meditate. Breathe. Wear your polar fleece mumps scarf to bed. Supplements may halp you manage.

[quilt4fun]

Welcome. Melissa from NJ!
        Having an aunt with Sjogrens gives you a little insight on this disease--are you close to her?  Being able to talk with someone who has this is good.
    I have met 1 lady, she lives in the same apartment building as my mother,  But they are almost 500 miles away.  I try to talk with her whenever we go to visit mom.
     Hang in there, the week will go by quickly.  There is a lot to read on the Sjogrens site.  Gather all the information you can and go with a list of questions. 

[smallfry]

Hi Melissa

Lovely to meet you as well, Welcome to the forum.

Cheryl

[Carolina]

Melissa, are you CindyLouWho's sister?



Welcome, welcome.

I imagine your doctor needs to absorb the results, and interpret them.  Talking about this in person may be better for both of you.

This condition, as with most AI (autoimmune conditions) is complex and not easy to diagnose or treat.

This is because each patient seems to be different, both in syndromes and symptoms, AND in response to the various treatments that are out there.

I hate to sound vague and uncertain, but that is totally the nature of auto immune conditions, most of the time.   Not that YOU feel vague and uncertain about your symptoms and maladies.   Far from it.

You do have 'some control', as much as we really have in life, generally.   It sounds like you have a doctor who is doing the right tests, and you're doing your own research, too.

Depression and fatigue are the hallmarks of all AI conditions and are part of the disease.  Not an emotional reaction to the disease, but actually part of the constellation of conditions, and present in 50-75% of people with an AI condition.

You will have some relief as you find medications and methods for alleviating your symptoms to some extent and methods for managing your life.

With a family history, you will find, I HOPE, support and understanding.

Remember, each person experiences these conditions in his or her own way, and in his or her own time frame.  There is no specific way you will experience things.

This means you need to take deep breaths, remember the joys in your life, and take your life as it comes.

This is the place to ask questions, share concerns, vent, laugh, and offer your own experience and support to others.

Remember, those who have the diagnosis (or not as the case may be) may go on for many many years with out coming back here, because things are just going along fine!   That happens.   Those who are here are those who find this support essential.

Let us know what happens with your doctor's visit.

Hugs

Elaine

[MissyLouWho?]

Thank you so much everyone!

Kathy~ I always wanted a BOY!! We have actually never had a boy born in my family as far back as we can go (my great grandmother) and my grandmom had 7 girls!
Carolina~ my high school boyfriend used to call me that after Cindy Lou Who, and I always liked it, lol!
Quilt4fun~ we are not close, but I can always call her. And the fact that she's a nurse will give me some educated insight as well.
Joe S.~ what are spoons??? I saw you reference it in another post. And I got polar fleece beat, lol. I use 2 electric blankets on high and 5 quilts on top 
Cheryl~ thank you!

[Joe S.]

Here is the link to "Spoon Theory":
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[MissyLouWho?]

Here is the link to "Spoon Theory":
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Wow.  I really identify with that!  My mom has lupus and is always saying she "only have so much energy for the day; have to spend it wisely". My little sister has fibromyalgia and using too many spoons will knock her out for the next few days.

[Meld256]

Hello Melissa, and Welcome! 

I apologize; I'm a few days late with my welcome, but I want you to know we're glad you found us.

I know it's difficult to wait for your appointment to get more answers. As suggested, you may want to search around here for info.  Just use the "search" box and type in whatever you like. Maybe that will help the time go by and prepare you for the appt. too. 

Sounds like your family members are no strangers to autoimmune conditions. That's interesting that your aunt is a nurse and has Sjogren's; hopefully she will be good support to you.
A new diagnosis (IF that is what you receive) can make one feel out of control and a little lost.  Let me assure you that we will be here with you on whatever journey you take.  You've just met a "new little family!" 

So...ask anything, comment, inquire.  We'll be here to help you just as everyone helps one another here.
Again, welcome, and we look forward to hearing more from you.

Take care,
Melinda