Thursday, May 1, 2014

May is Lupus Awareness Month

Hello everyone,

This is me.  I suffer from SLE Lupus, Lupus Nephritis and Fibromyalgia (along with other things but this is what I want to focus on).  There is no cure for Lupus.

Lupus is Latin for wolf.  In the 18th century, when lupus was just starting to be recognized as a disease, it was thought that it was caused by the bite of a wolf.  This may have been because of the distinctive rash characteristic of lupus. (Once full-blown, the round, disk-shaped rashes heal from the inside out, leaving a bite-like imprint.) 

Common initial and chronic complaints include fever, malaise, joint pains, myalgias, fatigue and temporary loss of cognitive abilities.  Also, mouth and nose sores, numbness in hands and feet, fingers turning white and/or blue when cold, headaches, loss of hair, anemia, swelling in hands, legs and feet. 

I'm sharing my story now because May is Lupus Awareness Month.   If you want to learn more go to the Lupus Foundation of America website HERE.

Image from Pinterest
I was diagnosed with SLE Lupus and Lupus Nephritis in December, 2010.  I was diagnosed with fibromyalgia in 1992/1993.  It's a double whammy as far as my immune system goes.  My body thinks my own cells and tissue are bad so it attacks itself. 
I look fine so most of the time people don't understand how I can feel so bad.  Most of the time I don't share how bad I'm really feeling.

I've experienced painful/swollen joints and muscle pain on a daily basis.  I've had so many symptoms that it took years to realize they were all caused by the same thing!  One huge problem I have is memory loss.  I make jokes about this as a coping mechanism.  It definitely helps to laugh!

My body sometimes feels sore, but it works.  I don’t sleep well most nights, but I do wake up to experience another day.   A good day is when I can get out of bed and go to work!  I’m thankful, because although my life isn't perfect, it is MY life and I choose to be thankful in it, as I continue to do the best I can.

I remind myself of this often because it's important to me.  It continues to remind me that happiness is valuing what you have, and enjoying the people, places, objects and events in your life.  You can almost always enjoy the things you have and make the best of the events happening around you if you decide firmly that you will in each and every moment.  Is it easy? No, but it is definitely worth the effort!

One of my major triggers is stress.  I've tried a few different things to learn to cope; some of them have worked and some of them didn't.  It's a journey that I have to take.  For myself, for my family and for my friends.

No, life isn’t perfect, (is it supposed to be?) but it’s pretty darn good.  Do not dwell so much on creating your perfect life that you forget to live the one you have.



Lunch Lady Jan said...

Amen to that. You are SUCH a positive person Kay...I know you suffer a lot but you always find a way through. You are very courageous and I admire you :-)
LLJ xx

Craftychris said...

A wonderful inspiring post! It's so cool you have such a positive outlook. I have suffered with Chronic Fatigue Syndrome for the last 9 years and every day is a struggle. I cannot work unfortunately, because of it, but I try to stay positive too! My crafting helps as do my my very supportive family and friends. After reading your story, I must try and be more thankful for what I do have instead of missing what I have lost! I do dwell on what I have lost too much! When people see me they never think anything is wrong either! Until they see my stick or my walker/seat! Take care xx

Di said...

What a post Kay, well done you! I remember being quite stunned when I found out you had lupus etc. AFTER we'd met on that wonderful holiday, but then realised that we did take a few rests when we had our times together in NM. But not ONCE did you give any indication that you needed little breaks. That's the sign of a fighter and one VERY brave lady.

Sending love and hugs, from Len too.

Di xxx said...

I am so very proud of you and after reading Di's comment I think you are one courageous lady and very brave! Well done girl!

scrapwordsmom said...

Kay I had no idea you suffered from these are always so positive and upbeat!! What an example you are!! Bless you for having the very best attitude with a rough situation.


Tamika said...

Thanks for the information. You hear the names but never know the details! I have a few scrap friends who have FM and they use this hobby to feel good when they can. You're such a wonderful person and admired for sharing your art work and your life you'll touch people on many levels cause some people are afraid to admit their stories.

Anne said...

Hello Kay just seen your post. You are very inspiring and have given me 'food for thought'. I have Fibromyalgia ( amongst other things)I do try to be positive and get on with life along with everyone else! Well done you! Anne x

Princess Judy Palmer said...

What a very nice and informative post. It is important to say that you don't look ill because people often think if you don't look ill you must not be but so many illnesses and diseases are hidden like that. Now tell us where that big bad wolf bit you?!!

Sierra Sue said...

I, too, have Lupus. But, Thanks be to God, it is very mild.
I take heart reading your blog, which I just found today. thank you for not only your blog, but your upbeat personality.
I've moved your site over to "favorites' and will be checking in again real soon.

Sierra Sue said...

I, too, have Lupus. But, Thanks be to God, it is very mild.
I take heart reading your blog, which I just found today. thank you for not only your blog, but your upbeat personality.
I've moved your site over to "favorites' and will be checking in again real soon.