Posted by: hockeygrl1 | October 3, 2011

A sad anniversary

4 years ago today, I was admitted to the hospital with Pancreatitis and my kidneys failing. I was told 3 days later that I had lupus. My first reaction was to ask the nurse for information on the disease. I had heard of lupus, but didn’t really know what it was about. I really had no clue about how much lupus would change my life.

I will never forget my anniversary because something beautiful also happened that day. A friend of mine became a grandma for the first time. She has this beautiful blonde baby boy who turned 4 today. It helps to know this and make this day not as bad. It’s funny. My mom ran into Brenda in the hospital. Brenda thought we were looking for Ashley’s room. It wasn’t so. They were looking for me and Brenda was shocked that I was ill enough to be in the hospital.

I sit here now reflecting on 4 years of living with illness. I’ve had multiple procedures done. One procedure, the placement and removal of a port, has scared my chest. The other scars I have are from multiple blood draws and IV’s. I can’t count the number of tubes of blood that have been taken in 4 years. They take so many that I often wonder how my body keeps up. I have had to do 24 hour urine tests at home. The grossest thing is that the urine needs to be refrigerated. The kids don’t like it, but it needed to be done. I might glow from x-rays, CAT scans and MRI’s. I’m sure my chart takes up a lot of memory.

Support during this time has been hit & miss. Some people try to then my mom blows it off saying it’s not really that bad. It is that bad, I just choose not to show it in my mood or actions. How would that help my children?

It’s been a long 4 years. I’ve gone broke and lost my house. I lost my boyfriend and many of my friends that don’t know how to talk to me with lupus. Routinely I feel lonely. Being ill means isolation and I’m so thankful for the computer, twitter and texting to allow me to talk to people. I couldn’t imagine how lonely and depressed I’d be without these tools.

During these 4 years I’ve learned how to better listen to my body and that the doctor is not always right. For years before my diagnosis I had on and off bouts of Pancreatitis. I was told multiple times it was just stress and I BELIEVED THE DOCTOR. The same thing happened with fatigue and lupus. I knew something was wrong, but I was willing to believe what I was told. I’m mad at myself for not pushing harder. It’s not just that I could have known what was wrong, it’s that I believe I would not of had this flare I can’t seem to totally get out of. My lupus and Pancreatitis would have been controlled by diet and medication and I’d still be working at a job I loved.

I know I’ve learned a lot about lupus during this time, but, unfortunately, new and exciting developments don’t come often. Unless I’m talking to my doctor, who does research, I never find anything new. I’ve read everything on the internet and it all says the same things.

“Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.”

The key here is MOST people. Right now I’m not one of those people.

In 4 years I’ve heard every story about so & so knows so & so and they have lupus and can work. Or, so & so did this and her lupus is better. If you’re tired drink more caffeine. You need to get out more or have a more positive attitude. They’ve even commented on how nice it is not to work and to have hobbies. People can be very cruel.

There have also been some people who have helped me greatly. Brenda had me working in her beauty shop once a week for a few hours and she’d color my hair for free. Someone at dance paid for a warm-up jacket for Cassie. The owner of the dance studio has been so understanding with payments, I just can’t express my gratitude enough. Kimmy sent home a yummy dinner when I was first sick and has kept me smiling with her bubbly personality.

I had to cut my hair when I first got sick. It was just falling out and looked awful. My hair loss was a combination of chemo and lupus. Now, 4 years later, it’s back and longer than it’s ever been. It has a lot of grey, but Brenda covers it up well. I’m shedding it again. My lupus doc thinks it’s menopause. I’ll find out in November.

So four years have flown by. Kids grew, we’ve moved, I’ve been better and worse, and have done a lupus walk. Now I hope to be well in this next 4 year stretch. I’m not good at being sick. It’s a full-time job, you know; Monitoring medications and scheduling appointments and making it to labs. Maybe there will be another new medication or even a cure. You never know and it doesn’t hurt to wish.

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Responses

  1. Noteworthy day, indeed! For me it was a relief when my adversary finally had a name, and I could learn about it and know what I was fighting. I hope you have a great day, just to spite the lupus!


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