Thursday, June 24, 2010

HINTS, HELP & HINDSIGHT

Hi.  Thanks for stopping by.

I'm guessing you have some questions and concerns about Rheumatoid Arthritis and or Sjögren's Syndrome (aka Sicca):
  • Do I have it?
  • What kind of doctor should I see?
  • Is there any help?
  • I just found out and I'm scared
  • So many medications and they all have such awful side effects...
  • Will I be able to have children?
  • Will I be able to keep working?
And, WHY THIS BLOG?

This is neither the only SS blog or the only RA blog [see Blog List in LEFT PANEL].  And it certainly is not the only place on the Internet for information about or support for people with RA or SS.

But it's the only place I know of where you value from more than 30 years of education into autoimmune diseases and the hindsight that has provided me.

Places To Go, Links to Click, Things To Read ON THIS BLOG

This blog - for now - is not arranged chronologically like most are. I have put the information on "pages" instead of posts so that you can access them by their at the top of the home page and not have to scroll or search through archives for them.

TOPICS:
 

  • Do I Have RA? I combine my academic (book-learned) and practical in-the-field experience to describe the signs and symptoms and tests and what doctor to see.
  • Do I have SS? Very few doctors know about SS and getting a diagnosis averages about 7 - 10 years.

  • RA 101 is your basic primer. Basic facts and description of the disease. 
  • About Sjögren's  (SS)aka Sicca, basic information. Includes tests for Sjogren's 
  • Medications for RA tells you all medications by category and which I've had experience with
  • Sjögren's - a place to share products that have helped with various aspects of SS 
  • Name Change for RA is an unpublished original article about the need to change the name of this disease to help it and us get the respect we deserve and not have to answer and explain everyone's misconceptions about it. On one support board we came up with some funny responses to this such as "Rotten Achy"
  • My RA & SS Journey describes my 30+ year journey and includes PHOTOS

  • Resources. Helpful, useful links for education and support for both RA and SS
 Be sure to also SEE VIDEOS in the panel to the right ------>

I AM NOT A DOCTOR OR HEALTH CARE PROVIDER. 
I am a self-help facilitator and advocate:
  • I've had RA since the 1980s. It's been moderate to severe ever since.
  • Was diagnosed with SS in 2010 and have full blown.
  • I'm an avid reader and keep up-to-date on research.
  • I have consulted with top specialist in many fields, including rheumatology with sub-specialties in SS, as well as orthopedic surgeons and others
  • I've been in in-person and online support groups and so have the collected personal experiences and advise of many
  • I've undergone approximately 10 surgeries - all RA related
  • I've been on a myriad of medications
  • I've had a few complications and undergone a major organ procedure
  • And I'd like to share the experience I've gained to help others
My intent is not to seek sympathy, admiration for being "brave" or to scare anyone. However, some thing about my journey may freak you out and be very scary...but that's how it is whether you read it here or elsewhere. There are some serious possibilities. But...

Please remember:
  • Not everyone will have RA or SS to the same extent. There are mild, moderate and severe cases.
  • Not every day is a bad day - I have FAR more good days than bad!
  • Every day new treatments are on the market.
  • If you were just recently diagnosed you have a much better chance of not experiencing all of the complications or the deformities of RA I have, because there are drugs out now that weren't out 30, 20 or even ten years ago...
KEY SEARCH WORDS: dry eye, dry mouth, Sjogren's Syndrome, rheumatoid arthritis, rheumatology, autoimmune, symptoms, dry eyes, surgery, lip biopsy, joint pain, saliva, fatigue, medications, treatments, diagnosis

    2 comments:

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      ReplyDelete

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