Monday, March 7, 2011

Gymnastics and, "What is it??"

Mom and I took the girls to see the Lady razorbacks gymnastics team last week. It was so fun!! What a talented group of young ladies. Wow, that made me sound old!! But seriously, I could only dream of being so awesome. The girls were so impressed. I didn't think we would ever drag Joslyn out of there! She threw a fit at the end of the night when she found out she wasn't going to get to perform and get flowers.
Mom has decided that she needs one of these adorable jackets. How cute right??

High point leaders, all rbacks of course :)

Joslyn was all about meeting and greeting anyone and anything!

Oh, and she insisted on performing her own routines anytime music was playing.

She kept saying this little blond cheerleader was her favorite.

Sue E. Pig was so sweet!

Oh, and just for fun, a shot of Joslyn giving us a glimpse of the future and her "sullen teenager" expression.

So I've had a lot of people ask me " what is lupus?" It's a very common question, one I asked when I first heard the word! Of course I wish I never had, but now that I deal with it every day, I know a lot more than I ever thought I would. And I've learned the best way to help people understand who I am, is to help them understand what I'm dealing with.
The word lupus literally means wolf. No one really knows why it was originally named that, but many speculate it is b/c wolves have a patch of discoloration along their face that looks similar to a lupus facial rash in a person. The facial rash is one of the most prominent symptoms of lupus, and many times leads patients and Dr's to suspect that is what they are dealing with. It is the least of the worries for a lot of people with lupus. For some reason, the immune system of a person with lupus is highly dis functional. It is actually too active, and instead of sitting and waiting on some illness to come into the body, it decides to start attacking healthy parts of the body, damaging them. The areas affected vary widely. For me, personally, my biggest problems are joint pain, head/neck pain, chest pain, hair loss, rashes, and liver damage. So essentially, all these parts of my body are being attacked by my immune system. The only way to treat lupus is to suppress the immune system, so it will quit the attack. But of course, then you run into to problem that when an actual illness does come along, the immune system is so suppressed it cannot effectively fight it off, so a person with lupus often ends up with a more complications from everyday illness like a cold, flu, etc. Most people with lupus seem to have problems with their Kidneys, often ending up with serious kidney problems. Mine has never attacked my kidneys, but decided that my liver was a better place to go! Also lupus is made worse by sunlight. So going outside in the sun is usually dangerous for a person with lupus, unless we take a lot of precautions. My skin is so extremely sensitive, that I mostly am not able to go into strong sun at all, at least in the summer.
I take a nice little cocktail of medications each day, including steroids, which I have been taking for 5 years now. Unfortunately they aren't the "make me look all buff and bodybuilder" type, they are the "save my life but puff me up like a marshmallow" type. It's a pretty cruddy choice at this point, take a disgusting medication that is harmful in other ways (weight gain, osteoporosis etc) or not take it, and not function at all. As in, if I go more than 3 days without the meds, I cannot even get myself out of bed b/c my joints are so stiff and painful. And, I'm not so naive as to think that this couldn't kill me. That if I don't take care of myself, it could take over me. We only have one liver after all, right :)
One of my favorite things I have read about lupus is called the spoon theory. It's about a woman who tries to explain to a friend what it's like to have lupus, by saying a person with lupus starts the day with so many spoons, and when they are gone, they are gone. Things that take up a spoon can be anything from a shower to cooking dinner. If you are interested the story is here: if you know anyone with any kind of chronic illness, it's a great story to read to try and understand what they are dealing with.
All of this, of course, is not b/c I'm looking for sympathy. In fact, I love it when someone finds out I have lupus and says "really? I would never have guessed, you seem to handle it so well!" B/c even though I don't ever really feel normal, it's nice to know that maybe I at least seem normal. this post was purely educational. I'm not good at explaining on the spot, and usually when someone asks me what lupus is I can only manage to splutter something about immune systems.
I do depend a lot on God to help get me through the worst times. When I go to the Dr, I pray on the way in, and pray on the way out over whatever complications were unearthed. I also pray, that even though I will probably have to deal with this every day for the rest of my life, I am alive. I am able to be a mother to my beautiful children. I am able to show God's love to other children that I teach. I have a purpose, and maybe that purpose is to show others that even in the face of illness or other hardship, we can still have faith in God and that he knows what is best for us. is the best site for learning anything and everything about lupus, if you are so inclined :)
Thanks for reading, have a blessed week!


Erin said...

Thank you for such an great explanation of lupus and how it affects you. I have taken care of patients with lupus, but you are right, it affects everyone differently. You do a remarkable job of dealing with it, because until I read this, I had forgotten you had it:). You are a strong woman and I am VERY impressed!!!

Kara said...

I found your blog through Sarah Creamer's comments on carseats. I live in AR too. I just got my girl the Britax Roundabout 55 and I just can't decide whether to install with latch or seatbelt. I am worried because I've heard that most vehicle latch anchors are only certified to 40 lbs. SO my question is-does the seat factor into that weight? My baby weighs 22 lbs but I am pretty sure that baby plus seat is more than 40. So do I use a seatbelt, or has no one ever thought of this? Ha. Plus the rear facing tether looks like I will have to wrap it forward around the sides of the carseat to attach to the rear facing tether anchor-there is not on on my floor in the middle seat and I want her in the middle. But, I hate the way that works! It seems like it pulls the seat and messes with the 45 degree angle because it is pulling the rear facing seat towards the actual CAR seat, not carseat! Does that make sense? Well, you can email me and my blog is