The idea that lupus is generally a fatal disease is a big misconception. In fact, the prognosis of lupus is much better today than ever before.
It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:
- follow the instructions of their physician,
- take their medication(s) as prescribed, and
- know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.
Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.
New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.*
Once upon a time I came very close to giving up on life and giving in to Lupus.It seemed that everything that could go wrong with my body did. I never tried to show it on the outside but on the inside I was scared to death. Everything that could go wrong with my body did all at the same time. I wrote down things that I couldn't say out loud to my family without breaking down. I needed them to know how much I loved them and wanted them to live full and happy lives if I didn't make it.
For my daughter, I wrote down things that every girl should know.Things like how to put on make up, how to know if you have to much perfume on, to never leave the house looking like you just rolled out of bed, and how to know if you were in love. I needed her to know these things in case I wasn't around to go thru them with her. No matter how good a father my husband is he isn't a mom. I also gave my husband my blessing to marry again. I tried to get him to promise me he would because I wanted him to be happy and not alone. All the things I could never say out loud I told him in my letters.
These aren't things a 28 year old should ever have to contemplate about much less deal with. However because of the severity of my Lupus I had to face my mortality very early on. It was also during this time that I learned to enjoy each and every day no matter what it brings. Finally I learned that you should never ever wait to tell someone how you feel about them. This is when I decided that no matter how bad I was feeling on any given day I can and will find something to be thankful for. I love life and I have a lot to live for.
Now the I live in the present and look forward to the future, I can't wait for my 21 year old daughter to get married and give us grand babies to spoil. I am excited about growing old with my husband and enjoying the our lives together. I look forward to simple things, like playing with our dog(s), drinking coffee, listening to my favorite radio station, spending quiet nights with my husband, teasing my daughter, going to work, and reading a good book.
I still have Lupus and I'll have it for the rest of my life. But I also have hope, joy, love, and peace in my life and these are the things that matter the most to me. Once upon a time I came very close to giving up but I didn't. I deserved more than that and so did my family.
www.lupus.org *
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