Posted in General

Get in on it….

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

This quote depicts allot of what I feel on bad days. It rings through for so many of us.

May is Lupus Awareness month, and May 10th is World Lupus Awareness Day.

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Do you know what Lupus is? Did you know that there is no cure for lupus?

If you are living with Lupus, know or love someone with Lupus or don’t even know what Lupus is, watch this video from Youtube. She is pretty informative and will hopefully shed a little more light on this Lupie subject.

here is the video

We do need more awareness and research. Like all Life Threatening diseases, we too would like a cure.

There is a drive to get the social media involved in raising the awareness. This video is from a research group. They too believe that social media is a forum for sharing stories and gaining insight into this debilitating disease. Through social media, we can also convey the importance of finding better treatments and ultimately a cure.

Here is the video

As most suffers and supporters alike know, we have a silent invisible disease. But we need not be silent. We need not be invisible. We need to Get in on it and spread the word…. and we need your help too for this.

So I went through a good few videos today and there were so many that were so very moving, and so many hit the nail on the head. Not just about the symptoms etc., but about the mind of a lupus person.

5 stages of lupus, is an interesting video which sheds some light into the mind of a Lupie. Check it out

here is the video

I am incredibly blessed to be in a decent place at the moment. but I  can relate to almost every thing in this little video.

I have been in “Lupie Land” for a long time now. It is a place where I almost always feel tired. I have pain. I’ve been sick. I have been a total whack job due to medication. I’ve fought like crazy to not be crazy. I sometimes itch and swell. I sometimes break out in bruises in the weirdest places. I had to adjust. I will never be the same.
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I was asked once, what is the hardest part about living with Lupus.

My answers –
My children. I have so missed so many precious moments. Like not being able to carry them when they got heavier, the older they get they don’t really understand why you cannot make those cookies today, or take a walk in the park, or carry them to bed … My heart saddens at that the thought
The unknown. Not knowing when my next flare might be, or not knowing if the next cold can become serious. Not knowing how long this remission will last. Will I feel good for a long time? Not having enough energy to achieve all the dreams my crazy heart has dreamt up.
My independence. I am independent. I am strong willed, maybe sometimes too strong. It has been very hard to learn to reach out and ask for help. There have been time when the help needed was obvious like opening a jar, but other times the help was not so obvious and I had to swallow my pride.

What most people take for granted, we are ever so grateful especially when we can peel a potato, have a good sleep, or  remember everything we wanted to.

So before I forget, GET IN ON IT please.

If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively will make a difference. Please GET IN ON IT.

 

Author:

A working mother who lives in Johannesburg. I thrive on coffee to keep me sane, music to soothe my soul, reading to pretend that I am clever, and most importantly my kids to know that I am loved.