Living With Lupus

Like most of you, I had heard about Lupus on the television and on the internet. I had never really thought about it much and I most definitely never thought that someday I'd be told that I have it. I am also a diabetic so when strange and unusual things began to happen to me, it was easy to assume that my sugar levels were out of control as they most often are.

The symptoms began about ten years ago. I was so tired, all I wanted to do was sleep. Taking care of my family and doing simple housework was a huge task. My energy levels were in the dirt, I would literally cry because I was unable to do anything. Most people "including my family" simply thought that I was lazy and this hurt even more than the disease itself.

My joints began to ache and hurt so bad that I could barely walk through the house. My feet and legs were swelling and turning red. I clearly remember one morning when I woke up to get my kids ready for school. My feet were swollen so badly that clear liquid was seeping out of my skin.

The tiniest cut would bleed terribly and bruises were turning up all over my body. I was feeling so horrible that I couldn't eat. Every time that I brushed my hair more and more of it was falling out. I knew that something was certainly not right. I went to the doctor and all of my blood work was coming back normal. At one point I thought that maybe I was losing my mind.

A few years later I began having severe swelling and pain in my abdomen. After fourteen days in the hospital, it was determined that I had several tumors. I underwent a complete hysterectomy and for a while, I actually began to feel much better. By now even my doctors were blaming the tumors for my earlier symptoms.

Slowly but surely those awful symptoms began to resurface. One night while I was at work I noticed that my hands had swollen so bad that I could barely move my fingers. Every part of my body was hurting and on fire. When I looked in the mirror I noticed a rash on my face in the shape of a butterfly. My eyes were puffy and my chest began to hurt when I breathed. I left work and went straight to the emergency room.

The doctor on call that night took one look at me and said "You have Lupus!" Those words sent shards of fear straight through my body. "Does Lupus kill people?" I didn't know, all that I knew for sure was that it was an awful thing to have and there was no cure.

That night at the hospital my blood work verified that I did in fact have Lupus. They sent me home on mild pain medication and told me to go see my regular physician as soon as possible. A week later I was sitting in the doctor's office scared and terrified. However, when my blood work came back it was all negative. There was nothing that showed any signs of lupus. I was told that I had been misdiagnosed. "If it isn't lupus then what in the world is wrong with me!" I was more terrified than ever.

This continued for months, test after test and they all came back negative for everything that the doctor's checked for. I was so embarrassed, I felt as if they thought that I was making all of this up. Then finally one day I got a phone call "The blood work came back positive for Lupus!"

I was sent to a specialist and learned that Lupus can actually hide in blood work. One day it might show up negative and a week later it can show up as positive. So many years had passed. I had been through so much misery and humiliation and now I had proof. I wasn't lazy and I wasn't losing my mind, I was truly sick.

A few of the first things that I had to learn was:

• Lupus is an autoimmune disease — the immune system attacks your own healthy tissues because it mistakenly sees them as foreign invaders.

• Lupus is a chronic disease — people who develop lupus will have lupus for the rest of their lives.

• Lupus has many different symptoms and affects each person differently.

• Lupus is not contagious — you can't "catch" it from someone or "give" it to someone.

• Lupus is not like or related to cancer.

• Lupus is not like or related to HIV or AIDS.

Now that I knew what was wrong with me, I had to learn how to cope with it because there is no known cure for Lupus.

• Maintain a manageable schedule with plenty of time for breaks.

• Reassign household responsibilities as needed.

• Ask friends or extended family members to help around the house when possible. It's okay to ask for help and trust me you're going to need it.

• If you're tired, take a nap! There's absolutely no shame in it.

While it's important to learn as much as you can about Lupus, it's also important to take a break from focusing on your disease when you need to. Living well with lupus often involves making some changes within your family, your profession, and your social circle. But even though lupus may affect many different areas of your life, it's important to remember that this disease does not define you. Taking time to do activities you enjoy will help you reconnect with yourself.

Individual therapy, talking to your doctor and even online groups can help you cope with issues like depression and anxiety. Trust me there can be a lot of anxiety involved with this disease. Depression is also extremely common and I too have dealt with it several times.

Life with lupus can be difficult at times, but it doesn't have to stop you from doing the things that matter to you. Many people with lupus live happy, active lives — and you will, too. There may not be a cure, but being diagnosed with lupus does not place a tag on your toe. We can (and will) live long and beautiful lives.

It's time to get out there and meet other people dealing with this disease. There are so many groups online (like on Facebook) that are filled with scared people who need a friend. Making new friends and sharing experiences has been the best type of medication for me. You're not alone. Together we will beat this and I am certain that one day there will be a cure.