PDA

View Full Version : just diagnosed



ronlynn1219
07-05-2007, 07:28 AM
hi i am a 36 year old female.. i have just been diagnosed with sle lupus. scared would be the best way to describe me. looking for all the help i can find. please email me.

malay*b
07-05-2007, 07:42 AM
Hello ronlynn1219,
Being scared is a normal first reaction. I was terrified when my doctor told me he suspected Lupus. The intial fear wears off as you live with Lupus everyday. Then you'll find ways to deal with it, dealing with its symptoms becomes a way of life. You can still find happiness and peace, inspite of any adversity. It just takes time in learning new ways to cope.

I hope the fear wears off very soon, and you start to find some peace in dealing with this illness.

I wish you the best,
malay*b

ronlynn1219
07-05-2007, 08:20 AM
thank u

IloveHistory
07-05-2007, 09:42 AM
Hi Ronlynn1219!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well! :)

Saysusie
07-05-2007, 09:43 AM
Hi Ronlynn :lol:
Welcome to our forum and to our family. I was your age when I was diagnosed and I went through the same fears. That diagnosis was almost twenty years ago. So, I am living proof that life does not come to a screeching halt with a lupus diagnosis and that you are able to live a relatively normal life with Lupus. I have been downgraded to mild Lupus and am able to control many of my symptoms without having to take a large amount of medications. Making the appropriate lifestyle changes, learning about Lupus (the symptoms, medications, treatments, etc.), knowing your body and protecting yourself, and following your doctors advice will help you to make informed decisions about your health and move you in the direction of possibly acheiving remission or, at least, minimizing your symptoms and avoid flare-ups.
You will find that everyone here is more than willing to help you by answering questions, providing information, giving you support and comfort and by letting you know that you are not alone.
I wish you much Peace and many Blessings
Saysusie

ronlynn1219
07-06-2007, 12:42 PM
Thank u anybody know any books about lupus or encouraging books also does anyone about washin your clothes in special detergent so u go in the sun

Saysusie
07-07-2007, 10:25 AM
Hi :D

Here is a list of books that I have read and that I always recommend:
* The Lupus Book: A Guide for Patients and Their Families
by: Daniel J Wallace.
* Lupus Handbook for Women: Up-to-Date Information on Understanding and Managing the Disease Which Affects
by: Robin Dibner
* The First Year--Lupus: An Essential Guide for the Newly Diagnosed
by: Nancy C. Hanger
* Taking Charge of Lupus:: How to Manage the Disease and Make the Most of Your LIfe
by: Maureen Pratt, David Hallegua
* Lupus: A Patient Care Guide for Nurses and Other Health Professionals
by: National Institutes of Health

With reference to clothing;
I do not know if there are any products that you can wash your clothing in that would give them UV protection. Most of us simply wear lightweight clothing in the summer that covers our bodies. We also dress in cool, non-fitting layers (as this circulates the air around our bodies) and we wear hats, hats, and hats. Also, I use physical sunscreen (containing zinc oxide) as body lotion (I mean, I slather it on everywhere and use it daily) and glasses with UV protection.
There are some clothing lines that claim to be sun protective clothing. I have a large shirt and some pants from Coolibar. The prices of these clothing items are pretty steep, so I can't afford an entire wardrobe. Collibar's products include sun protective clothing for women and men, sun hats, sun protective swimwear, shade structures, sunglasses and multispectrum sunscreens and sunblocks. They claim that every product that they offer is tested and rated for its UV protection level.
Also, Sunsolutions offers the same as Collibar. Both can be found online and you can order their products online.

I hope that this has been helpful

Peace and Blessings
Saysusie