Tuesday, October 30, 2012

Good Questions from Great Readers

Today's post is yet another installment in the Answer. That. Question! show.

Since these questions were posted publicly on my blog, I'm assuming that the questioners would be OK with me writing a post that includes them. If that's not the case, please let me know and I'll modify the post.

I thought today's questions deserve a less silly format, so just for today I'm going to abandon the studio audience, the voice-over disclaimer guy, and the APPLAUSE sign. Although if y'all feel prompted to clap, please feel free to do so.

I can't imagine why anyone would.

So. Question number one comes from Cindy:

Q: "Your entry from October 26th 2012 was very helpful. Would you be able to do an entry for dry eyes, too?"
A: The October 26th post was titled Oral Care Products as Recommended by a Dental Hygienist. I'm glad that you found it useful. Actually, the information from that post was very generously shared by Laura Strom, MS, LMFT, LPCC and JoAnn Snider, RDH BSDH, so I can't take any credit for that impressive list. I would love to be able to provide a list for dry eye products, so if anyone out there has a professional contact person that would be willing to collaborate with me in creating one, let me know!

Question number two:

Q: Heidi asks, "How are you doing this week post the infusion?"
A: I'm slowly recovering my energy levels and am right about where I expected to be at this point based on my experiences following my first cycle of rituximab. I was able to go for a little drive-wherever-we-want-to vacation last week and managed that surprisingly well. Thanks for asking!

Question number three:

Q: This from Cynthiane: "......Jump forward to fall of 2010 and I start having the strangest symptoms. Dry mouth. Tongue sticking to the roof of my mouth and having to peel it off in the mornings when I got up. Not being able to chew food without a drink of water. The sides of my face were swollen, my lymph nodes were all swollen in my neck and under my arms. So, now the doctor says I have Sjogren's, which I had never heard of. Then, BAM!, test comes back I have Hashimoto's. Last winter I start noticing my hands are funny colors and I can't hold anything cold. Doctor says I have Raynaud's. Then my hands get nodules on the joints, both hands, then my feet, too. Pain is miserable. No great surprise here, Rheumatoid Arthritis has come to join the great autoimmune party going on inside my body.
Throw in some glucose intolerance and some GERD and that completes the picture. I'm wondering if you have any advice or ideas? I don't suppose there is anything I can do to keep further illnesses at bay? Thanks! Sign me TIRED of feeling TIRED."
A: Oh, girl. First of all, know that all of us here know exactly what you mean when you identify yourself as "TIRED of feeling TIRED", and that we completely empathize with your situation. We have all been where you are and it's not fun. So here's a virtual group hug from me and everyone else on Reasonably Well. As far as advice or ideas, I think that one of the most important thing that a sjoggie can do is to become his/her own advocate in his/her health care. You can do that in several ways, the first being to become as educated and informed about your disease as possible. There's lots of great resources out there; check my sidebar for links to Sjogren's related information sources such as The Sjogren's Forum, The Sjogren's Syndrome Foundation, and The American Autoimmune Related Disease Association. It's also important for you to connect with others that are dealing with autoimmune disease. Sometimes we feel so isolated since many health care providers aren't familiar with the diagosis and treatment of autoimmune disease such as Sjogren's.  I'm glad that you have found Reasonably Well, but there are several other great sjoggie blogs out there. Check my side bar under the LINKS section. (If anyone has read sjoggie blogs that aren't listed there, please send the links to me and I'll be sure to add them to my list.) Additionally, I have found an incredible amount of support from members of the Sjogren's World Forum, which is a very active message board with a fantastic group of moderators. Check it out. The questions asked there are ones that I and others have wondered about many times, and the answers that are given from others very useful.

About my sidebar items: If you are viewing Reasonably Well via a mobile reader, like your cell phone, my sidebar does not appear. To see the list of links, you can do one of two things: scroll to the bottom of the page and click "View web version", or read Reasonably Well on a computer.

Well. Alrighty then. Cut to commercial -- this episode is OVER. See y'all tomorrow.

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