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My Lupus Story

By: Therese DeVault - Mt. Sterling, Ohio 2007

 

I don't know where to start. In 1996 I was having some issues of being tired a lot, just thought I was working too hard. I had sores on my body that wouldn't heal, sores in my nose that would bleed and never heal up. I went to the doctor, he gave me a cream for the sores and said he really didn't know what it was or was was causing this. He had never seen anything like this. At the time, I lived in the Daytona Beach, FL area. I moved back to Ohio, where I am from, in 1998 and started getting really sick. I just felt like my body was so heavy and couldn't get enough sleep. I had sores all over my body, ulcers that covered my whole mouth inside. Needless to say, I couldn't eat or drink much of anything, it hurt too much. I suffered with this for about 2 months. I got so weak, I couldn't move and I wasn't eating, so I was starving! I lived about 4 blocks from the hospital on the far west side of Columbus, Ohio, so I got in my car somehow and drove myself to the hospital. I thought I was going to die. I know I was close, I could feel it.

Once I was checked in to ER, they put me on a bed. The doctors kept asking me a lot of questions, and I was hardly coherent. They were baffled and really didn't know what I had. Finally after hours on this bed in a cold room, they asked about my mothers health history. It was then that they started running test to see if it was lupus. Sad to say, that's what the result was. But my stay in the hospital was scary. My blood pressure shot up to stroke level and I was put in ICU. I can't stress enough of how out of it I was. I really didn't know what was going on and was in so much pain!

 

My medical treatment from that point on has had it's ups and downs. More downs than ups I should say.

I was put on a steroid prednisone.  It make me gain weight, my face was swollen and looked round.  I think they call it a "moon face".  I took it for so long with such high doses, that today I have suffered a lot of tissue damage. It has affected my joints and have had to have a knee replacement. Now I am told my other knee is doing to have to have next.

Lupus has caused me to have other health issues. I have high blood pressure and have already had a mild stroke, which affects my memory some. My kids will say "Mom, remember when I did this or that was my friend from our neighborhood", and I don't remember. I feel I am missing part of me somewhere.

 

The lupus has also affected my thyroid. I have had to have radiation treatment to slow it down. Now it is too slow and I have to take medicine for rest of my life to keep my thyroid working correctly.

I have arthritis, depression, fibromyalgia, raynaud's phenomenon, heart problems, rashes on my face and neck and sensitivity to the sun that causes my skin to have a red rash that doesn't go away. I have no energy to get up in the morning. Now the lupus is going into my kidneys. I have had spells where my hair would just fall out and get very thin.  I sure there is more, but it is so hard to explain the pain and worry I go through.

I have medical insurance and rx coverage and I still can't afford all of my medications. So there are times I go without it.

 

I can't find a doctor to believe how much pain I am in, and prescribe a pain medicine that will help take it away. At one time I did have a pain management doctor, but something happened to his practice and I no longer see a doctor in this field. I have had consults with other doctors in this specialty and they WILL NOT prescribe me anything to help. One asked me, " Who told you that you have lupus?". WHAT?, my medical records don't show that?  He was so mean to mean that he would not see me as a patient. How are we supposed to get treatment if the doctors we see don't even believe us.  Other people say, "you don't look sick, I would have never known". I am so depressed all of the time and feel so HELPLESS!  Because there are so many people, in all walks of your life that don't take you and your disease seriously.

 

Every loved one in my life has been affected by this disease. They try to understand and help, but it's too hard for them to even understand. We really need help with awareness and with medications that we can afford and that will help take our pain away. Even if it is a narcotic, so what, we want to live without the bad pain and be able to participate in life too. We don't want to stay in bed, or on the couch all day!!

 

When I was taking oxcycodone and oxycontin, I was able to do my housework, visit with my family and have some sort of life. But now I can't find anyone to help me with this now and I'm a couch person again!

My mother, Constance S. Green, may she rest in peace, passed away in March of 1984 at the age of 41. She suffered with lupus for 13 long years or more. As a child I remember her being in the hospital all the time. We live in a little town outside of the big city of Columbus, Ohio. Well she had to be admitted to Ohio State University Hospital. It seemed like weeks to me that we couldn't see her. Finally we were able to go see her. She was brought down to a waiting area in a wheelchair and when I looked at her my heart just stopped. I was scared! She had lost so much weight that her legs were just bones. That is not a site for a child to see.

Later in life, I took care of her as she got sicker. She knew 2 weeks before she died, that she was not going to make it. She told me this!

So my experience with lupus is a sad one. A bad memory and a nightmare I live with inside my own self today.

 

If you know someone with lupus, please don't take their pain and conditions for granted. They need your help and support. We need help for the cost of our medicines, for we have to take so many pills. If you have to make the choice to eat, pay a bill or get your meds. What would you do, pay your rent and eat or pay for your meds?

 

Thank you for listening to my story. I could tell you more, but I think this will tell you a start of what I have experienced and  suffered with in my life with lupus.

 

May God Bless,

Therese DeVault, Mt. Sterling, Ohio