Lupus: Looking for answers

I have been attempting to read up on Lupus and learn as much as I can about this disease and how to live my life as healthy as I can.  Its a challenge to figure out on one's own.  Every person with Lupus has their very own version of Lupus, with their very own list of symptoms. Symptoms that change from day to day, hour to hour. In my exploration and blind grasping for answers, I found a resource or two.  
The one that I use almost daily is MyLupusTeam.com, this is an on-line forum for people with Lupus, parents, spouses and loved ones of people with Lupus. This forum has taken the role of "support group" for me as there are no support groups for Lupus in our area yet.  I have been on the sight almost daily to ask questions about medical care, read a few kind words from another person who has lived with the same challenges, to ask about medications, and share my experiences with others who really know and can sympathize with our every day challenges.  It's been a real help to me and has helped me face Lupus with better information, better results, and a better attitude.  What I see that gives me real hope is the fact that I see people on this site who have been living with this for 12 years or more, who have found a way to live their lives, and have a positive attitude, and be as well as they can in spite of their disease.  There is hope there. There are several of these folks who I admire very much and have learned so much from, I owe them a debt of thanks already and I've only been on the site for about a month. I find that sharing with them allows me to not be quite so depressed when the Lupus hits, and a bit less whiny when I'm in pain. I've learned that there comes a time when you are uncomfortable so often that your loved ones get kind of sick of hearing about it all the time. I get that, I get sick of it too.  I have learned that people really care about the Lupus patient, but when they ask "how are you?" they really don't want to know how you really are. They just want a quick overview and to know that you're not headed to the hospital ER today. So I save those conversations for my close loved ones who I would normally share secrets with, I know that they will want to know the real details, and I share with MyLupusTeam.com folks because the can relate and give real advice about what works for them when they are in my shoes.  It's been very helpful.
The second resource that I found is a book, "Embracing The Wolf" by Joanna Baumer Permut.  While I did find some of the content helpful, I also found some of message a little difficult to apply to real life.  However, this book is really a story of one woman's life after being diagnosed with Lupus and how she, her husband and her young daughter, had to change their lives and goals to accommodate her disease. The thing that I love most a about the book is that she got counseling when things got really ugly and later her husband also got counseling.  I can see that loosing the strong, active, capable career woman that he married would have been a difficult adjustment.  The part that I took issue with is that this family lived in a world of money.  She was able to quit working, they had to sell the sail boat because she couldn't be out in the sun, she was able to afford weekly massages, going to lunch with her old work friends, have girl spa days, and volunteer when she was well enough.  That is a different financial world than most of us with Lupus live in.  While I think that's great that she was able to live a fulfilled life, that is because she was financially supported by a very high earner.  I think if she had had to keep that job to have medical coverage, if she was a single mom, if she was the high earner, or if she wasn't married, this would have had a very different ending.  The book is a little dated, but like I said earlier, there is some good nuggets in there.  Lupus impacts an estimated 1.5 million americans today, the number of African American women are 3 times as likely to have Lupus. There are a lot of us Lupies out there, we are not all in as fortunate a position as the author.  For some of us, it's a bigger challenge to stay healthy and still pay bills.  
I have also started reading another book about Lupus, it's main focus is young women, teens and college age women who are diagnosed at a younger age.  My first impression, is that it uses too many exclamation points! but I have not been reading it long. I'll share more on this book later.  Thank you for your attention. Be well.
Here is the link to MyLupusTeam.com:  http://www.mylupusteam.com









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