Finally.... I am not alone

[Brandi]

I am a new member and I just wanted to introduce myself.  I came across this site by accident and once I started reading I couldn't stop.  I appreciate the opportunity to read other's experiences and daily challenges.  As I read through some of the stories and comments I felt and overwhelming sense of relief..... Finally, I am not alone.

Here's my story in a nut shell:

My symptoms first presented at age 8 after a severe reaction to sulfa that landed me in the children's hospital for weeks.  Honestly, I don't think I have had a pain free day since - and that 22 years ago.  I am now 30 although most days I feel like I am 80.

At 12 I was diagnosed with juvenile RA and then a year later with lupus.  At 16 they added overlapping sjogrens and vasculitis to the list.  By 20, MRI's show evidence of osteoarthritis in localized joints in my hands and hips and at 28 I started getting injections for carpal tunnel. 

It has been a long journey.  As a teenager I would get so angry because I felt helpless.  I just wanted to be normal.  I was blessed to have wonderful parents that were always supportive and encouraging.  I know it broke their hearts to see me in pain but they never let me feel sorry for myself.  They would always tell me "It's ok to be angry for a moment, and it's ok to be sad for a moment, but then you must move on - For anger and sadness are wasted emotions"  I admit it took many years for me to appreciate the wisdom in their words. 

I still have days when I feel angry or sad and I still wish I was "normal", but then I remember their advice and I choose to move on.  I don't want to use the precious energy that I have on those wasted emotions.  These days I try to focus my energy on the positive and I celebrate my successes and triumphs no matter how big or small.

Yes, I have RA, Lupus, Sjogrens, Vasculitis, etc, etc, etc.... but that does not define me.  In fact, in many ways I believe it has made me stronger.  I put on a brave face everyday and face the world. 

I now have have my own family - a wonderful man and an amazing 5 year old daughter.  We both have  successful careers, a beautiful home and great friends.  Even on my worst day - when the pain seems unbearable and my entire body hurts from the inside out - I am still thankful. 

Everyday is a challenge but it is also a gift.   

[smallfry]

Hi Brandi

What a remarkable person and what wonderful parents, I am always very sadden at seeing young people with such terrible conditions and starting as young as 8 you certainly have had it tough.

I just want to say you never feel alone when you come to visit Sjogrens World, and quite often I have referred to it as my refuge.

What an inspiration lovely to meet you and welcome.

Cheryl 

[Katybarstool]

Welcome Brandi

What a journey you have had! I think it has made you a great asset to our SJS family.

Kathyx

[Joe S.]

Welcome to the group. I think management is the key, that is why I keep recommending that people read "Spoon Theory". Some of us have put what we are taking in our signature.

[Seeker]

Welcome and a big Howdy  Brandi. I am happy you joined us.  I hope you will have a pleasant time with us.  I am glad we can be apart of your Journey. 

Welcome again
Seeker

[Duchess]

Welcome!

Duchess

[Bucky]

Hi Brandi - welcome!   

You've had a lot to deal with through the years.  Unfortunately, as you well know, autoimmune diseases tend to run in packs.  Many of our members have overlapping diseases.  Some times it's hard to tell where one stops and another picks up.

I think your parents gave you sound advice.  I really believe that the way we handle what is thrown at us (whatever "that" might be) helps or hinders us.  Yes, we HAVE this disease called Sjogren's - but we are NOT the disease Sjogren's!!

The best thing you can do for yourself is to arm yourself with knowledge about Sjogren's.  We each have to be our own advocate for our health.

Lately, we seem to have quite a few new members in their teens and 20's.     As we know, Sjogren's knows no age limit.  Many of us who are "older" can look back 15-20 years and realize we had symptoms way back then but didn't know it.

I look forward to your contributions as you share the journey with all of us here.  We share the good, the bad, and the ugly.     Also, on the Social Board we share the non-Sjogren's related stuff . . . food, laughter, pets, etc.

Your attitude will take you far!!   

I notice in your signature line that you don't take Plaquenil.  Has your Rheumy ever mentioned this as "most" doctors prescribe this for Sjogren's and Lupus.  I do know some people aren't able to tolerate Plaquenil.

Again, welcome.
Bucky

[Scottietottie]

Hi Brandi 

Welcome to Sjogren's world. When you're here - you're never alone!

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

Take care - Scottie 

[MissyLouWho?]

Welcome! I'm new too, so I can't offer any advice, but I'd like to tell you your strength and attitude is inspiring    I hope you find this community a great resource!

[tomsmom]

Welcome!   

[Brandi]

Thank you all for your warm welcome and kind words. 

Bucky, to answer your question regarding plaquenil.... 
Yes, I took plaquenil for about 12 years. It is an "oldie but a goodie" and I agree it is a classic staple for many Lupus patients.
I had to come off of all of my meds (except salagen) when I got pregnant with my daughter.   After she was born I had a rough year of frequent flares and the RA was my biggest challenge during that time.  For that reason, I decided to treat it more aggressively and chose to go on Arava.  From what I understand, Arava treats the joint pain/swelling but also has immunosuppressant qualities to treat the active RA.  For that reason my doc said she did not recommend use of Arava and Plaquenil or any other meds that had immunosuppressant qualities.  Apparently, the combination can put you at greater risk of severe life threatening infections.
I feel much better on the Arava and I personally would choose it over methotrexate injections any day.... but everyone is different and each drug has its pros and cons. 
My pain was greatly reduced with methotrexate injections, which I used for two years; however, I was allergic to a preservative in the medicine so if I got even a teeny tiny drop on my skin when giving myself the injection - my skin would get quarter size blisters that looked like the worst sunburn you have ever seen.  I tried the pill version but did not respond as well - plus I thought the mouth sores and hair loss were greater with the pill form than injection.
Anyway, I seem to do well on the Arava but it carries strict warnings!  It is absolutely toxic if you are pregnant or plan to get pregnant.  The drug stays in your system for up to 2 years after you quit taking it.  If you consider having children after you discontinue use docs told me they can give you something to speed the process and flush your system but it still takes a long time.  I don't plan on having anymore children but I just wanted to put that out there since it can be very dangerous.   

Well, thank you all again for welcoming me.

[Pisces24]

You sound like you have a good attitude. Yep life is what you make of it.

Sorry you got hit so early in life with stuff. With me I didn't get hit early with the health problems but my dad was disabled when I was 13 and me an only kid. So I got used to doing a heck of a lot of adult stuff/responsibilities like yard work, grocery shopping and it sure helped a lot when I got old enough to legally drive too.

You either let yourself get bowled down by adversity or rise above it.

Welcome to the Group!

[Patze]

Hi Brandi,

Let me also welcome you to the SJS World and family!  I hate to meet you this way, but I'm sure glad that you've found us!

You've gotten some good info and theres not much that I can add.

Again, welcome and I hope that you find this board as friendly and amazing as I have all these years later.

Take care of yourself -

Patze

[Meld256]

Hi Brandi and Welcome! 

No, you're never alone around here.  As Bucky says, we share, laugh, cry, comiserate on almost anything and everything, helping one another along.

You have a wonderful outlook and attitude. We look forward to hearing more from you. Please jump in anywhere at all. I, too, am glad you found us and I hope you enjoy being here as much as I have in our little family.

Take care,
Melinda