Saturday, April 13, 2013

Living With Systemic Lupus

I have been living with systemic lupus for eighteen years now. Some years have been "existing" more than "living." I've been through many doctors, many medical tests, one medication after another to treat the symptoms.

I've spent many days in bed because I could not walk across the floor due to swollen joints, lost the feeling in my legs and feet due to neuropathy and spinal stenosis (aggravated by systemic lupus).

I've made so many trips to the ER that if I had a dollar for each trip, I'd be rich. I've spent many days in the hospital. I've had surgeries to relieve the attacks on my system caused by systemic lupus.

I lost the life I worked so hard to gain. I lost my savings due to the extreme expense of this disease. I lost my "friends" who just couldn't understand why it wouldn't go away like a cold or the flu.

I've watched many people show ignorance and act according to that ignorance. Judgement was easier than finding the facts. People have avoided touching me, sitting next to me, walked around me because they feared "catching" my illness.

Systemic lupus is not contagious. It is more dangerous than lupus in that systemic does damage to organs causing death. The damage is irreparable. There is no cure. There is no certain medication for it. Only medications to treat the symptoms. They lose their effectiveness after time. The side affects are almost worse than the disease.

I've sustained a great deal of damage over the years. Just because you can't see it doesn't mean it isn't there. If I could submit my medical records on here, they would show ten large phone books in size.

I have experienced medical stress, physical stress, emotional stress, and "people" stress for eighteen years. I never expected to live this long. As each year passes, the pain is worse, the damage is more, and taking care of myself becomes harder.

Even with the financial wipe out of my savings, loss of friends, hospital tests, tons of medication, multitude of doctors, the worst part of all of it has been to deal with it alone. I've had to fight for my own rights as a patient, make medical decisions on my own, accept the "death" of each part of my life, my body, my future.

It use to hurt me when people didn't care enough to understand, to reach out to someone suffering and alone, especially people from my church. Now I understand no one can understand this unless they have walked the same road.

It is a lonely, expensive, life threatening disease. It is hard. Most days I hate dealing with this alone. I hate counting pennies, making decisions between medications, utilities, or food. Quite frankly, I get tired of suffering physically.

I've been harassed, criticized, treated like trash because my illness put me in a financial position that could not be helped. People have been cruel. Each attack left a scar so deep I cannot begin to understand why.

I am thankful for the good things that have been sprinkled between the years. Meeting Kevin Spacey in 1999 was a joy. Sitting in Pres. Jimmy Carter's Sunday School Class was a once in a lifetime opportunity.  Going to Savannah with my friend was so much fun. Being able to go to the beach once a year thanks to my friend, Mark, gave me something to look forward to - all blessings.

But for some reason I am still here. The only way to handle this disease is one day at a time. Do what I can, when I can, if I can and hope for a better tomorrow and pray someone will be encouraged.

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