For those that are not familiar with this disease called lupus, it is an inflammatory of the immune system that attacks itself.  Many people live with this disease, and might be someone you know or have known, but the frustrating part is that it affects everyone differently.  My wife was diagnosed with lupus in July 2011, and everyday, six years later, we still are learning about this unpredictable ailment.  Just so you can better understand what it is like for a lupus warrior, think of your worse flu or cold days and think about living with that everyday with no relief in sight.  Although I don’t have the disease, I live with someone who has to get up and fight every single day, find the strength and courage, to live on a normal life as possible.  Then again, what is exactly a normal life for you?

When someone says, ‘I just want to live a normal life’ what does that mean exactly? Is having a normal life subjective?  Who determines if your life is normal or not? Most, people would ultimately say you, yourself, has the final determination.  Well, with lupus it practically tells you how you will live your life and what you will do to make sure you don’t make it angry.  Of course, if you choose to be hardheaded and not listen to your doctor, your body and not listen to those that live with it daily, you will surely regret it and see your life quality decline too soon.  Lupus warriors and cancer survivors or people living with cancer can have a similar lifestyle with chemotherapy, daily medicine to take, loss of hair, skin rashes, skin paleness, weakness, swelling and potentially getting worse with treatment.  However, as I stated before the disease effects every person differently and not all lupus warriors have to deal with those symptoms.  Not all at once.

For my wife, dealing with the worse pain and flare ups come during the summer time, especially when the humidity is harsh.  One of many reasons we moved up north because the humidity is not has harsh to her body, I don’t get migraines as much and the lifestyle up here fits our personality better.  Even though we are introverts, we still like to get out amongst the people and have fun and just live life to the best of our ability.  Some might be thinking that since we are introverts, how do we deal with our career choice being amongst the people, working closely with people and dealing with different personalities that could rub us the wrong way?  The answer is that our hearts are the biggest part of our personality and that we love to help people, if we can be a blessing, and see others around us happy with their life.  Sure, we have family and friends that are much different than us, have different beliefs, different views on life and politics, but that doesn’t matter too much.  Regardless, of what your life is about or how you live it, you deserve to be happy and content.

Other lupus warriors hurt during the winter with the crisp cold striking and attacking their joints.  Sometimes with all lupus warriors you can see their swollen joints and just touching them ever so gently is very painful.  Not so much of needing to have the right touch, but you have to know how to touch them and where to touch them.  Hearing from alot of lupus warriors, taking showers feels like little needles coming out of the shower head, eating and drinking can be extremely difficult and can potentially choke if their muscles in the swallowing process is not functioning properly.  Other issues that lupus can create or bring on is gastrointestinal problems, depression, thyroid issues, extreme fatigue, edema, weight loss, weight gain, fever, joint stiffness, seizures in some, anemia and chest pain.  Sadly, I have seen my wife experience all these symptoms and the worse part about it is that there is nothing I can do; except make her as comfortable as I can and get what she needs.

So if you know someone who has lupus, trying to figure out if they have lupus or is curious about the disease I suggest you do some research so you can be aware what it does and how it affects others.  It took my wife about two and a half months to get diagnosed and even then I was able to figure it out before she was officially diagnosed and put in her records.  Still to this day we come across doctors who either don’t believe this exist or don’t understand it, not educated about the disease.  With doctors carrying this kind of mindset it can become very frustrating and make you want to give up trying to figure out what is ailing you.  If this has happened to you, don’t feel like you are alone in this fight to make the medical world understand and be better educated about this disease.  Some have gone years and years before diagnosed, and the trick behind the delayed prognosis is that lupus has no specific test.  It takes numerous factors and symptoms to determine if you have lupus.

Do you know or understand how much this cost with numerous doctor, urgent care and hospital visits? Daily? Weekly?  We spent over $3000 just in co-pays, medicine that didn’t work and equipment.  Others have surely spent more and just telling someone that it is all in their mind, doesn’t exist and practically making them feel like a mental patient doesn’t help the credibility.  Also, having a doctor just throwing you pain medicine just because he or she can, even though you may need them, doesn’t show the sensitivity and care the patient needs.  Not only does the medical field need to be more aware and educated on this disease, but your employers and organizations alike.  This disease can be so bad for some that they have gone on disability, but even that is a fight in itself and lead to more frustrations and flare ups dealing with that stress.  Most employers don’t understand and will quickly get rid of an employee who they think is a liability and trying to play the system instead of actually showing support.

All in all this disease is very unpredictable and can strike at anyone at anytime.  Anything can set off a flare up, such as stress, anger, too much excitement and just sometimes life can be a hindrance.  More awareness needs to be spread around about this disease and get the medical world on board to learn more and do more.  A cure for this disease needs to be found just like cancer and other severe and deadly ailments.  Spread the word and get yourself educated.  The more you know, the more you can do to help!

Thank you,

Henry Scott



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