Tuesday, November 29, 2016

Such Is A Life With Lupus

Yesterday was productive. Today I'm in so much pain I can barely function. It isn't the kind of pain you get from over doing, but pain that festers from a lupus flare. We were so blessed with quite a bit of rain yesterday and chances are there today. Unfortunately rain and the wacky up and down weather we've had pushed my flares into overdrive. Such is life with this horrible disease.

So I'm stuck in bed again praying my next door neighbor will settle down and stop slamming doors so I can rest!

I actually had someone tell me the other day that when I had an actual illness to let them know. Instead of responding with "well you don't look stupid. Perhaps you hide it well," I merely walked away. The Bible teaches in Proverbs that if you argue with a fool you are no better than him.

So for that Proverbial Fool I say the following: 1. Lupus is a real illness. It causes your body to attack itself and the damage is irreparable. 2. Lupus causes other illness as well. This disease has spawned  twelve new ones. I'm taking fifteen medications, plus Benlysta infusions, to manage them because none are curable. Sometimes I think I rattle when I walk! 3. Lupus will not only send you to the ER and put you in the hospital, it gives you countless doctors to visit. You literally become a professional patient. 4. It Rob's you of a normal life. You reach a point you can no longer function let alone work. Each year something stops working causing you to learn how to cope. This becomes your normal. 4. Friends become far and few between. I've lost several lifelong Friends who either thought I might need their health from time to time or simply didn't care. Then there are those who Get tired of you being sick all of the time and their last minute invitations stop. Get sick and see how yours handle it. 5. You lose jobs. I was laid off because of lupus. Reason being? They didn't want my honourable disease to cause their insurance premiums to go up. Top it off with the fact I was working for a large church at the time. 6. And this disease kills. Many have died from it including author Flannery O'Connor. Her father died from it as well. Causes heat attacks, kidney failure, lung damage, plus a multitude of other things. 7. The weather will literally make you sick! Up and down temperatures, rain, snow, extreme heat, extreme cold. Believe me when I say you have no control when it happens. 8. If you still have family you're not guaranteed they will be there for you. And if you don't (mine were all dead by the time I was 35), you have to find your own strength to get through it. Some days are impossible. Others not. You have to decide whether to spend your life being angry and blaming God, or realize He's the one who loves and cares about you everyday and will provide your needs when a friend is too busy in their own life. And if you are still single, you have to face facts that illness will chase off any potential of marriage. I was engaged twice. Both hit the road because they didn't want to deal with this horrible disease. You find a way to face the truth and go on. 10. Majority of doctors don't listen or care. It is just a job to them When you find one who does, hang onto them! I was stupid by moving out of state leaving behind the best doctor I ever had and paying the consequences by being back on the doctor to doctor trail.

Just remember that every action has a cause and affect. You reap what you so. You learn what to do and what not to do. To this person I say that I am sick. I did not ask for this life, but still know God works all things to good. I'm weak mentally and physically. Stress makes it worse. The stress others put on me is far worse because I can't seem to avoid it. You never know when someone will go off on you. I have suffered twenty-two years with this disease and believe me when I say it is far too real. Doctors predicted I would die within ten years. Let it be known you're not leaving this world until it comes your time. And know this disease is a horribly expensive one. Costs of medicine, hospital costs, doctors, treatments, inability to ever work again can take you down. Before there ever was a Medicare part D, I lost all of my savings and was bankrupt from it. We're talking some individual meds costing into the higher hundreds per month. Now multiply that with fifteen medications.

Systemic lupus is more real than you could ever know. And did I mention total strangers will judge whether you're sick or not?  Perhaps that is why I have no patience with people who whine and whimper over things that just don't matter in the long run. when you have to bury you mama, daddy, and only siblings, when you suffer alone in life from an unwelcome disease that you did not cause or ask for, and when you're left to deal with the hard task of life without someone giving you money whenever your hand is out merely wanting something you don't want to work for, then I will listen. Better yet I'll care and help you the best way I can. otherwise remember life IS hard for all of us. Kindness and compassion goes a long way! What a life!



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