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Desiree
08-25-2013, 06:06 PM
hey everyone... my name is Desiree... I was just diagnosed on Thursday with Lupus. I have been having lots of hand/wrist/joint pain for nearly a year which I assumed was to wrist sprains from carrying my youngest child. After my most recent appointment with my dr about it, my pain was getting significantly worse and I was losing grip strength and having numbness in my ring and pinky fingers as well as dropping things (most concerning was me dropping the baby twice)... she decided I had pinched my ulnar nerves in my elbows but wanted to know why and decided to run tests for RA and Lupus. well the Lupus came back, she said my levels were VERY high...she didn't give me numbers but she said it was a very clear diagnosis. Waiting for her office to set up an appointment with a Rheumatologist for me... I have significant family history, I have a cousin on my moms side and a cousin on my dads side as well as my paternal grandfather ( just found out about his). My paternal cousin has SLE, she was diagnosed at 15 with joint pain and rashes and now has organ involvement... our grandfather had discoid lupus... right now it seems I only have joint pain and fatigue...but I have been having odd rashes that were explained as eczema since I was pregnant with my second son in 2008. It started as a blistering rash around my wedding rings... dr said it was contact dermatitis.. whenever it flared I just didn't wear my wedding rings until it cleared. I would use steroid creams to clear it up. over the years it has spread further and further every time it flares... it now goes around 3 fingers and at its worst down my palm even after I didn't wear my wedding rings for a year... and my right hand is now doing it too. This past Christmas I developed a weird rash all over my legs and arms (horribly around my armpits)... dr again said eczema and this time gave me a shot of steroids, oral steroids for 6 days and a steroid cream...within in a week I had a MRSA boil on left side near my armpit. I have what appears to be the butterfly rash on my face.. I have had it for YEARS and always assumed it was roseacia or roseola or whatever... I feel like Ive been hit by a bus to be blunt. Im shocked at how fast my life has changed... Im scared, but relieved...because the diagnosis means I'm not crazy and I have been in pain for a reason.. I have chronic nerve pain all over, most notably I have trigeminal neuralgia... I don't know if everything is related...but its good to finally have a starting point... I have been saying it for years, I felt like my body was attacking itself...

Saysusie
08-27-2013, 10:44 AM
Hello and Welcome to our family;
Like many of us, you've struggled for many years with various symptoms and are now relieved to know that there is a name for all of those things that you've dealt with and you ARE NOT crazy! Yours is a familiar story for so many of us.
I am sorry that you've been diagnosed with this disease, but I am glad that you came to us. Here, you will learn that while this diagnosis does change your life, it does not mean the end of your life. Many of us have helped one another to find our "New Normal". You may not be able to do things that you once did or to do them in the same way that you were once able to. But, you will find new ways to do old things or find completely new things.
We are here to help you in any way that we can and to let you know that you are not alone, you are amongst people who understand and who truly care. Take a bit of time to read the "stickys" on the top of each forum. They are filled with great information and may even answer some questions that you may have. Feel free to join in on any conversation or start one of your own. Again...welcome!!

Peace and Blessings
Namaste
Saysusie

SleepyInSeattle
08-27-2013, 10:52 AM
Welcome, and I will say here what I usually say to "new recruits" - I know the diagnosis is scary, but NOT being diagnosed is even scarier. Now you know what's going on, you can work with your doctors to make things better!!!!

My life has improved SIGNIFICANTLY since being diagnosed. Sometimes it takes a while to figure out what combinations of drugs/lifestyle changes/diet changes/etc work for you, and sometimes adjusting to medications takes time and can be a bit rough (often the first couple of months on something like Plaquenil or Methotrexate have more side effects than they do later, when you body gets used to them) - and of course some medications take several months to really start working. It's hard to be patient.

I think of Lupus like a dragon that lives inside me...medications/a careful diet/getting sleep/managing stress...they work together like a lullaby, and over time they have sung the dragon to sleep. It's still in there, and can be roused - but mostly the lullaby works, so me and my dragon live peaceably (if uneasily) together. You have to find the right lullaby and give it time to work....then KEEP SINGING!

Best of luck to you - be hopeful! And this group is a WONDERFUL resource for support and information.

Jaynie
08-28-2013, 07:10 AM
I think of Lupus like a dragon that lives inside me...medications/a careful diet/getting sleep/managing stress...they work together like a lullaby, and over time they have sung the dragon to sleep. It's still in there, and can be roused - but mostly the lullaby works, so me and my dragon live peaceably (if uneasily) together. You have to find the right lullaby and give it time to work....then keep singing!


Oh yeah! So nicely put!!
On the downside, my dragon is stirring.....!
Jx

steve.b
08-29-2013, 03:58 AM
..... I think of Lupus like a dragon that lives inside me...medications/a careful diet/getting sleep/managing stress...they work together like a lullaby, and over time they have sung the dragon to sleep. It's still in there, and can be roused - but mostly the lullaby works, so me and my dragon live peaceably (if uneasily) together. You have to find the right lullaby and give it time to work....then KEEP SINGING!

Best of luck to you - be hopeful! And this group is a WONDERFUL resource for support and information.

so well said ...... I love the analogy. thank you