My Story With Having Lupus by Sandy Lavender

spia_lettersThe following story was submitted by Sandy Lavender as part of the Share Your Story project.

It Was Not My Precious 18 Year Old Daughter Ashley That Was of Supposed To Die, It’s Me I have Lupus

I will never forget going to my Internal medicine doctor in June 2000 and telling her I felt so bad and I had symptoms I never had with Fibromyalgia and I didn’t know what was wrong all I knew was something was wrong .  Was really wrong with me. I never hurt or felt so bad before. I had pain all, that would not go away. My feet and hands were numb plus they felt like pins and needles sticking me, extremely tired. I engaged in daily activities and exercise every day to help with Fibromyalgia but I didn’t feel like walking or exercising like I had done just about every day for years which really helped the symptoms of fibromyalgia. The  joint and muscle pain was so bad that prescription pain medication couldn’t even control it, I had migraines headaches, depression, and anxiety and panic attacks and  Memory loss, my hair started coming out, I had  sores  all in my mouth that really hurt. I had one thing that happened to me that I have never seen written I felt like things were moving inside of me.

After a month of testing I got that call on a Tuesday night from my doctor at 7:00 PM that I had Lupus and she said I am sorry to tell you this. I didn’t know what Lupus was but it didn’t take me long to find out what it was and how it changed my life. It affected my kidney, I have vasculitis, my thyroid quit working correctly so it was hypothyroid, swelling (edema) in feet, legs, hands, and/or around eyes, butterfly-shaped rash across cheeks and nose, my painful or swollen joints only got worse. I have pain 24/7, I do not think they are related but I had 3 back surgeries. One thing I never hear about is I use to get my teeth cleaned every 6 months and rarely had problems now I get them cleaned every 4 months and I am always needing root canals, crowns and fillings because I have Sjogren’s Syndrome which makes my eyes and mouth dry I drink water and eat sugar free mints and still have all these dental problems. I have more problems from Lupus but I can’t list them all.

Then comes the worst thing, yes worst then Lupus worse than anything that could ever happen my daughter Ashley was killed along with her friend by vehicular homicide as they were both passengers. I still have to deal with all the pain from Lupus but that is physical which is awful but mentally, losing Ashley is by far the worst that could ever happen to a parent. Why Ashley she was only 18 and had her whole life and here I am in horrible pain every day and it was? Ashley that died it should have been me, her Mom I have Lupus and she was my young little girl.

The only thing I can do is I believe in God and Heaven and I know she is there and just like Romans 8:18 says. Romans 8:18: For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. Even though some days I can’t even walk and all I can do is lay down with a heating pad to try and get some relief, I know God does not make mistakes but WHY DID HE TAKE Ashley and not her sick Mom. I am on disability, I got fired from my Accounting Manager position I held for 10 years with ‘Digestive Healthcare of GA and had to go on disability. I needed to go on it but had to support 2 children by myself so I went to work and worked hard every day. I should have filled for disability and not felt I had to be loyal so I could have gotten disability from the company and Social Security so I would have enough to live on.

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