Check out these crafty pages

Monday, May 11, 2015

Please, Just take a moment, and READ my story....

First, Thank you for stopping by and taking time out to read. This is about LUPUS. something we all need to become familiar with since it is now affecting more than 4 million people. And, that is the count for those who have been diagnosed.
I am asking each of my friends, family across the miles, and FB and Blog acquaintances wink emoticon 
.... Please wear PURPLE on MAY 15, 2015. This is for LUPUS awareness. Take a moment and get familiar with what it is. You never know whom you may be helping out in this small request.
I personally have been fighting this cruel disease since the late1980's.
It was nearly 7 1/2 years before I was diagnosed. Sometime after my 2nd child was born.
Being a person that literally burned the candle at both ends......(raising a family, working full time, volunteering in my spare time, taking a few classes, being a wife, keeping my home spotless,and attending various functions)...
...To becoming a person who could barely get through a 4 hour day due to severe fatigue or strange pains through out my skeletal system or sudden illnesses that just could not be explained.. I literally could sleep 18 hours and wake feeling as if I had not been asleep in 4 or 5 days.
What a relief that day was... and what a scare at the same time. Relief, because I actually was not crazy. Something had been wrong for sometime and everyday was a different battle. Unfortunately, at that time, there was only a very small paragraph in the medical research books when I went to study what this disease was. I knew then, that life was not going to be easy on me or my family. Trying to raise two young girls, be a wife,and work full time was pure hell. Though I was diagnosed, there were no easy answers to helping me become somewhat functional. The meds offered at that time were nearly null and what was offered well, the side effects were nearly worse than what I went through on a daily basis.
Now I am finding new hope, the research for Lupus over the last 6-7 years has increased by 10 fold. I am one of the lucky ones with this disease. I have had the help of my immediate family and some friends. Though I had to change my life and sit out on many things... I have been able to live and raise my children. My husband has been a saint (to some degree.....PS. I don't want him to get a chip on his shoulders...LOL). I have accomplished learning how to adjust, to limit some stressors (not an easy task at all), to learn my body and what and when flairs are more than just daily fatigue. I still have a hard time living the life of the functional person on an every day normal scale, but what is normal.
You never know what the person around you may be going through... LSE is not a visible disease, It is not a disease that you can look at them and know they are ill. 80% of Lupus patients can not explain sometimes how they are feeling. Because it's not the common cold, or regular fatigue. It's not Arthritis or the Flu that plagues them. There body is attacking it's self from within. Everyday is a battle and everyday is different. Not one Lupus patient is the same as the next Lupus patient. Symptoms are as varied as the person and flairs are a random as where lightening may strike. 

The LUPUS Foundation and the doctors have a long way to go. So please take this moment and learn about Lupus, Share this knowledge and if you can, take on this cause that effects nearly 4 million people or more. WEAR PURPLE on MAY 15, 2015. Donate, even if it is just $5 or a $1. We need help for many young mom's, teens, as well as our Mother,s Aunt's, Sister's, Friends,and yes even about 10% of men have this disease. There are so many who have not been diagnosed because it is a disease that masks so many other diseases. It is not a disease that can be pinpointed with just one test. the Normal length of being diagnosed can be as long as 6 years and even longer if primary care doctors are not aware of the signs. (which is the case more so than not).
I ask you to go to the Lupus foundation and read up on the various things you can do to help. I have lived with this disease day in and day out. I get the negative and the know it all attitudes that they think they know what Lupus is.. but you do not unless you are actually living it. So, before you judge someone on what you think may be there problem, make your self aware and be a less judgemental and more compassionate person. 
Take the time to help. It could be your family member going through this, if not now, possible down the road.

No comments:


Just as pieces stitched together in a quilt warm our bodies, scrapbooks bind together memories to warm our hearts. ~Author Unknown~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The designs and instructions listed on this blog are for personal use only and may not be sold in any form without specific permission. Thank you for respecting each creator's heart of joy.

Inspire me Fridays

The Craft Pad