Lupus 101 - Basic Facts, Tips & Resources

So you found our forum, but do you know about all the wonderful resources HealingWell.com has to offer? You have a number of places to start...

Visit the Lupus Resource Center

Take a moment to explore, we hope that you will stay awhile and visit HealingWell often.

The following link contains basic, easy to understand, info about Lupus, including symptoms and criteria for diagnosis.

/resources.lupus.org/collections/diagnosing-lupus

Lots more information about the Lupus Foundation and finding the chapter nearest you:

http://www.lupus.org

Post Edited By Moderator (Lynnwood) : 11/20/2017 1:13:04 PM (GMT-7)

TIPS for New Members. The tips topic was started by Emmi and the following are the tips that Emmi gathered after all the members had added their suggestions. Thanks again Emmi!!!

Emmi said:

Welcome! We are glad you found us. We hope you post often, ask questions, keep us up to date with your ups and downs, vent, share what you find helps you and we always appreciate a good laugh!
We combined our collective wisdom and put together the following ideas that help us manage, cope, and live as well as possible with a chronic illness. We hope you find them helpful.
(Please forgive any typos! They have been edited, but....)

* Keep a log of your symptoms and doctor visits including tests ordered, prescriptions ordered including dosage and doc' responses to your questions and his/her instructions to you

* Take a symptom report (list) and questions with you to all dr. visits

* Find ways to keep laughing--Especially at yourself!

* Be careful in the sun. Most of us are very sensitive to the sun. It can cause anything from a rash to a flare of symptoms. Wear sunscreen and cover up with long sleeves and a hat or even an umbrella. Stay out of the sun from 10 am o 4 pm. For some of us, even a little sun exposure can cause trouble.

* If you are waiting for a diagnosis and you get a rash or mouth sore, take a picture of it to bring to the dr. It can help with a diagnosis.

* Learn all you can about lupus. It will help you make the most of you dr. visits and will help you spot trouble a lot sooner.

* Be proactive in you treatment. Ask a lot of questions. Find out what labs are being done and what each of the labs mean. Do the same with your meds - know which meds you are on and why.

* Trust yourself - you live in your body and you are the expert on your body. If you have a dr. who is brushing off your symptoms or is not listening to you, it may be time to look for another doctor. I believe you get the best medical care when you and your doctor can act as a team in your health care.

* The suggestion of taking pictures of sores and rashes has helped me a lot; I am able to show my rheumy rashes, joint swelling and mouth sores that may not be present when I have my appointments.

* Got to dr. appointments with no makeup on...don't even use moisturizer. Make sure you are clean and neat but don't fuss with your hair and skip the creme rinse that morning. Your hair and skin give the docs some clues about your health, so you don't want to enhance them for you dr. appointments.

* From time to time, take someone who sees/interacts with you on a daily basis to the doctor with you. Have them describe their impressions of how you are doing with your doctor. It's good the the dr. to get another view of what's going on with us.

* Make lists and take them with you.

* If offered treatment but no diagnosis take the treatment and be glad that a dr. is willing t treat without a diagnosis.

* Once you get medication follow the dosage schedule religiously never ever ever stop your medication or skip doses.

* If a doctor treats you poorly or doesn't listen find a new one.

* Serious illness causes lots of changes, not just physical, but emotional, spiritual and even or personalities. Take the time and effort to really get to know the "you" that you are becoming.

* Feelings of guilt are normal. They don't last forever, so be patient until they subside.

* Mourning the person we used to be, and were going to be are also normal. In a way living with a chronic illness is in a way being "reborn" as a slightly different person.

* Most importantly, live each day to the fullest, and love just as fiercely.

* Trust your instincts. You know your body better than anyone.

* Find a rheumy who cares, listens and explains and, most of all, believes you. don't settle for just any doctor because there's one out there who will be a good fit for you.

* If you think you have Lupus, or any other disease for that matter, don't stop till you get a diagnosis.

* When you take your list of symptoms to your rheumy, list every single symptom you have, whether or not you think it's related to your suspected lupus. I used to tell my doc only about symptoms I thought were related to lupus, only to realize that other medical problems or symptoms I had were also related, but I didn't know it. So let the doctor sift through all that stuff...they're the experts. Bottom Line: the more your rheumy knows about you the better they'll be able to provide a diagnosis.

* Take breaks and quick naps. These work wonders!

* Drink lots of water and cut out refined sugar and salt as much as possible.

* Cranberry supplements have worked really well for me and all my blood work, urine work.

* Husbands don't mind hearing about lupus, but not all the time. It reminds them you're sick and they want to fix you and they can't. (Men are from Mars, women are from Venus, chapter 2).

* Have a good sense of humor about things -- but in our case DO sweat the small stuff because it could be a sign of a bigger issue.

* I always look at it like it could be worse. Take what you have and try to look at it as a blessing. Sometimes it is not easy.

* List what you still have. Example: sight. Even if you can't go outside, you can see the birds, flowers, etc.

* Whatever God, Goddess, Buddha you believe in, a Thank You would be nice.

*Try and not anticipate. Take each day and challenge as it comes. I hear too many on this forum and other forums who spend too much time worrying. Take charge of your health care, be your own strong advocate with the docs, and try to enjoy each day. Don't equate every pain or symptom with some dire new disease. That is hard to do and you should not ignore serious and persistent symptoms but I think too many dwell on every little tic. I am trying to manage my health situation but also return to a normal, enjoyable existence. If I am going to get sick again, then I do not want to waste a day in worry and distress. If I continue to improve then I still have not wasted a day in distress. (this point quoted from Bsime.)

If your doctor allows . . . increase your anti-inflammatory meds (prednisone, ibuprofen, etc.) a bit to stop the extra inflammation (which is usually a good part of the flare process).

Only do the chores that will "stack up" if they aren't done (and that is only if you are able). That includes, laundry, dishes and keeping things picked up. (That eliminates dusting, vacuuming, floor washing and most other chores). You'll find that those three things can be done in a small amount of time and you'll feel better when the are done. If you can't vacuum for long periods of time, it is no harder when you finally get to it. If you don't make the bed each morning, it doesn't hurt anything. . . etc.

How to Make a Grain Bag:

A grain bag is made by taking a man's tube sock and filling it 1/2 to 3/4 full with dry beans, whole grain feed corn or rice. I like the feed corn but its not easily available to some. Fold the top down about 1/2 inch and sew it. Sew a second time. Now you can pop it in the microwave. Try two minutes and then you will know if you might need to leave it in a bit longer.

The grain bag is really soothing to painful areas and can safely be taken to bed. You can make several of the bags and use them as supports/props in bed too. They are so comforting. We call it "a hug in a bag".

Here is some great advice from our member Butterflake on Applying for Social Security Disability:

www.healingwell.com/community/default.aspx?f=29&m=2485076

Finding a Lupus knowledgeable Dr -

I suggest checking with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Helpful websites include:

https://www.thelupussite.com

https://www.lupusresearch.org