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A very Lupie Labor Day! -How to help friends and Family Understand your illness

Posted Sep 06 2010 5:16am
Good morning and hello java and what seems to be shaping up to be a lovely end to our Labor Day weekend!
I hope you all had a great weekend as it wraps up today (as you can tell by the picture, I had a blast!--and you have not even seen the Hammock swing... YET!) , and that all you enjoyed (and hopefully had) your extended weekend! We have been busy over here with BBQ's, family gatherings and get togethers this weekend, and they are always a treat to say the least, when we are all able to get together and catch up over some good food and drinks! And after spending the majority of the weekend around close family and friends, It has come to inspire me for today's post. Today's post we will discuss ways to help your family and friends understand your lupus or chronic illness. I do not simply mean what it is, as you can google it and find a definition on wikipedia that is rather accurate and still not have a clue what Lupus really is. So today, I will provide you with some ideas and resources to help you educate and share with your family and friends so that they may be able to gain a better idea and understanding of how Lupus affects you and what it is you are dealing with on a day to day to basis. So without further delay, I'd like to present you with a few tips and resources/ideas on how you can help your family and loved ones gain a better understanding of your illness:

1. Write A letter- (sample provided from a woman named Theresa Stoops-written to her loved ones to help them understand)

WHAT YOU SHOULD KNOW ABOUT ME


My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability


My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.


My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.


My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,I have shared these thoughts with many "Lupies", as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine -- Do not judge them as you may Not know their Inner pain.



2. Offer friends and family resources! Provide them for them so that they can try and understand, they may want to know and learn more, but simply not know where to look and find the materials!


The Spoon Theory -- A must read by Christine Miserando Donato (founder of But you don't look sick.com!) A website chockfull of great information and insight!


The Lupus Foundation of America - This website offers great tools and resources, I suggest the About Lupus part and Lupus Now Magazine's creative corner as it offers a bunch of personal pieces written by Lupus patients and helps family and friends to see Lupus not just as a disease but as a part of you.


The Lupus Magazine - While on about 6 months in the making, The Lupus Magazine is a great resource full of the latest Lupus news and happenings from around the Globe, and with writers from all stretches of the Earth, it offers a great diverse look into Life with Lupus! (also has a great blog attached that keeps up to date news and latest information!)


3. Invite them to tag along to a doctor's appointment--Sometimes it helps for them to see you working with your doctors, dealing with blood work, and planning a long term and short term course of action. If they are not comfortable coming in to the actual examination room, perhaps just tagging along for moral support is a good start!


And those are our three tips to help your family and friends learn a bit more about your Lupus. It also helps to talk about it. When they ask how your appointment went, be honest. And that wraps up our post on this lovely Monday of Labor day weekend... I am off to refill my java and perhaps see if I can't find any fantastic little trikes and hammock swings to indulge myself in! (Yes, I am a little Lupie--What a fitting disease for someone as Chronically Silly as myself!) I will leave you with our page of hope, where we are fundraising to assist the LFA's Grass roots campaign to get better treatments and hopefully a cure for Lupus, and of course our daily Jolt-of- Java as I am off to work on some CHRONICLYsILLy Designs© brand spanking new products (to continue our raising awareness efforts!-- Join in!)


Jolt-of-Java: "Happiness is inward and not outward, and so it does not depend on what we have, but on what we are."-Henry van Dyke


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