Shocked and in Awe at AI World - please help

[Meld256]

Hi Blove and...

Welcome to the forum!   

We're glad you found us, although I'm sorry to hear you've become part of this group.  It's like a party no one wants to attend! 

Sounds as if you have a very good dermatologist to look at the whole picture, and as others have said, if you like the rheumatologist, it may be worth sticking with them.  Seems as though if any doctor is willing to take your concerns seriously and willing to work to help manage your symptoms, they're a "keeper" in my book. 

Also glad to hear you are beginning Plaquenil and eye drops.  The benefits from Plaquenil can take different lengths of time for each of us, although it does seem that full benefits take a while.  Honestly, I began to feel a bit less fatigued in just a few weeks. 

I know how hard all this is to understand with the diagnosis.  And difficult to have loved ones understand, too.  Over time, I hope you can discuss this frequently with your husband; you may find that you both have many of the same feelings.

Please know that you are always welcome here.   We "get it" and can relate to so much that we each go through.  This is really a great community of support and information here, with wonderful members, and I hope you feel comfortable asking anything, and knowing that we care.

Keep us posted, OK? 
Take care,
Melinda

[slccom]

Brenda, I'm so sorry you have been hit so hard. My advice for you and for your hubby is to check out butyoudontlooksick.com to understand the "Spoons" theory of energy. Secondly, my husband is going to send me the way to get the protandim effects a whole lot cheaper. It is a multi-level-marketing program, so unnecessarily expensive. We didn't find it helpful, but my husband is continuing to take the tumeric, which you can buy in a large quantity for about $5 and buy a bag of empty capsules to fill about half full for very little.

We were suspicious when we would mention a symptom and someone else in the room (the "shill") would say that it cured them of that. However, some of the science behind it was sound enough that we got the ingredients and gave it a shot. We are so glad we didn't fall for the scam.

When I get that from my husband I'll send it along.

Glad you found us, wish you didn't need to...
Sharon

[mshistory]

You've gotten wonderful advice already, so I'll just add welcome to the forum from me, and I agree with those about Sjogren's and Lupus being so similar that it's hard to tell them apart sometimes. I have Lupus overlap in my signature below because my pulmonologist and the rheumatologist he works with think I have an overlap; MY rheumatologist though thinks I have primary Sjogren's and is a younger doctor who seems to really get how devestating this disease can be.

I've had skin rashes and Sjogren's can cause them. With a negative ANA, SLE is really unlikely (but not impossible).

BTW, I didn't expect this diagnosis either. I was 32, went to the dermatologist about hair loss, she ran some blood work and found out my ANA was sky high and referred me to a rheumy. After more testing, my SS-A and rheumatoid factor were positive and I had markers for systemic inflammation, and my rheumy's office called and said my results were consistent with Sjogren's. I didn't believe the nurse!

A year later, I finally believe her