Monday, May 4, 2015

May is...

May is a lot of things to me. Field trips and school assemblies, baseball practices, planting flowers in my garden. But this year, May is also something new to me.

May is Lupus Awareness month.



I was diagnosed earlier this year with Lupus, as well as Connective Tissue Disease. Strangely, it was a huge relief to have a name to the mysterious aches and pains. That relief lasted for several weeks, while I tried to learn about these diseases. Then a bit of melancholy crept in, because there is no cure, only treatment. And when my daughter asked me one afternoon "Can I catch Lupus?" it about broke my heart.

I consider myself very fortunate. My rheumatologist is optimistic that with medication we can prevent this from affecting my organs. All drugs have side effects, so I hate the thought of swallowing pills for the rest of my life. I'm taking them, though, because I want to be around for the rest of my life. I've also been taking steps to reduce stress, making sure I get enough sleep, eating better -  and that has helped too. I am learning to say No (mostly to myself, lol)


It's estimated that 5 million people world wide have Lupus. But lots of us don't even know what it is. No two people have the same exact symptoms. That makes it very difficult to diagnose. There's no "test" that says yes or no. That being said, it was a simple blood test that showed I had elevated markers for auto immune. My doctor called it an arthritis panel, and I truly believe he didn't expect anything to come from it. I'm pretty sure he believed I was a hypochondriac lol. I know that's what my husband thought. It's been kind of a lonely road, actually.

Lupus is an auto-immune disease that primarily affects women. It has a whole range of symptoms, and there is a checklist of criteria that must be met to be diagnosed. It can range from mild to severe, and I definitely fall on the mild side, for which I'm thankful.

I'm still figuring a lot of things out, and adjusting. I was felling pretty sorry for myself one day, and my husband reminded me that nothing has changed. I'm still the same as I was before I had a diagnosis. And on the plus side, I can take naps and say "doctor's orders!" haha! :)

Well, I hope you've learned a little something about this crazy disease. If you have any questions or advice for me, I'd be happy to chat in an email! craftytammieATyahooDOTcom

5 comments:

Allison C said...

Hang in there. I was diagnosed at 19 and I'm 35 now. It's not easy, but I too have the "mild" form so far. The drugs are no fun, but I'm alive and I have to keep reminding myself of that. Keep your spirits high and live one day at a time.

Crickets Corner said...

Like Allison said, Hang in there. I have or rather did have Hep C until this month. Ten years ago there was no cure for it and if you wanted to try for a cure it was a harsh regimen that had poor success rate. Fast forward and now it's curable in 99% of the population with just one pill a day for 8-12 weeks. Have faith that there will be a cure for Lupus that is as simple as a single pill. Researchers are finding new treatments every day so I know you have a long life to look forward to. Until then just keep on keeping and everything will work out.

craftytammie said...

Thanks Allison, same to you! If you ever need someone to talk to, I'm here.

craftytammie said...

CC - that's amazing, congratulations on your cure! I hadn't even looked at it that way, so thanks for giving me a new perspective on it! It really helps!

Beezus said...

I am going to say congratulations on a diagnosis because I know how frustrating it can be when you know you don't feel well and you don't know why. So many diseases these days are all about "management". Oh, how I hate that word! I'm a cancer survivor, but even though my cancer is gone, I have to take medicine to prevent it from coming back. Taking pills is the pits, but as you say, it definitely beats the alternative. I think your husband is a wise man to remind you that you are the same person as before. :) I'm going to steal that for myself when I feel frustrated and down. Thanks for sharing!

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