Steele Butterflies

I decided to participate in the local Lupus Walk on October 5, which is coming up in just over one week. This was a decision I made after seeing my rheumatologist on Monday, so I'm kind of scrambling to get things together and organized. Before I made the decision, I emailed friends and family to see if anyone might want to join me. I got lots of positive feedback, so I decided to take the plunge.

My friend Catrina is going to walk with me, and her sister is also joining us. I have one or two other friends who are considering walking with me too. I am excited to have their support!

Catrina and I decided to name our team Steele Butterflies. Steele is my maiden name (so that part of the team name will memorialize my mom and dad). The Butterflies part of the name is because butterflies are the symbol for the Lupus Foundation, and also something that reminds me of my mom (she made a comment about becoming a butterfly when she was in hospice).

If you'd like to read more about the Lupus Walk or Steele Butterflies, or if you'd like to participate in some way, just check out our team website. Thanks!

I Already Knew

I paid the rheumatologist a $40 copay today to tell me what I already know: I'm having symptoms of MCTD.

No, I wasn't diagnosed with anything. I had more blood drawn for tests which I'm sure will be positive, like they were in January. (Not being pessimistic; I already had positive results, and things like this don't change back to negative.) The doctor put me on Plaquenil, which is the main drug prescribed to patients with autoimmune disorders like Lupus and MCTD. He said it'll take about 2-3 months before the Plaquenil kicks in and I start to feel some relief from the joint pain and tiredness. I took my first one tonight, hoping the 2-3 months will go quickly.

I asked the doctor what the difference is between Lupus and MCTD. He said some doctors don't think there is a difference, but he does. He said the main difference is an antibody found in Lupus patients that isn't found in MCTD patients. The other difference is Lupus can affect the brain and liver, while MCTD doesn't. I asked how he knows someone has progressed into the stage where the disease is considered active. He said the person will have positive test results and also start showing symptoms. I guess it's as simple as that. As for my symptoms, the doctor said to take Advil or Aleve three times a day, plus the Plaquenil. If I am still in a lot of pain, he can start a round of steroids like Prednisone. I go back to see him in 8 weeks. And that's that.

I know the next thing y'all are champing at the bit to know is how I'm feeling about all of this. I'll admit that I cried as soon as I left the doctor's and called Dan. (I'm proud of myself for not crying in the doctor's office!) I don't want to go down this road. It sucks. I don't want to be on meds for the rest of my life. (And especially NOT Plaquenil - it has a sordid history and was a major issue between me and Mom.) It. Just. Sucks. That's all there is to it.

And then I take a step back and tell myself that I've gotta do whatever it takes to feel better. If it means medication forever, then so be it. And I tell myself it could be worse. It could be the C word, or some other awful disease or disorder. Thank God it isn't. At least now I have a game plan, and I'm doing something instead of sitting around on my butt just waiting and hoping that I'll miraculously start feeling better. God knows what He's doing, and is working through me through this. I have faith in that. I already knew what the doctor was going to say anyway. And I already know how this is all going to end. It's my choice on how I want to live with it, right?

P.S. In talking to Dan about this just now, I had an epiphany. The main reason I'm upset about any of this is because I have a big fear of turning in to my mother. So I need to keep reminding myself that no matter what diagnosis I might get, it's not going to be a diagnosis of, "I'm sorry. You're Brenda." I need to let go of that fear. I am not my mother.

I'm a Believer!

After Tuesday's post about my joint pain, I truly am a believer in prayer. (I already was prior to that too, of course! You know what I mean.) That morning after I posted, I still felt so crappy and was having a pity party for myself. On the way to a playgroup, I had a stern talk with myself. I said, "Self, get over it. Here's the best news of the day: you are ALIVE. Breathe it in, let go of the pain, and appreciate the fact that you have the grace you need and all the love in the world to get you through the day." Or, as my fave quote from The Shawshank Redemption would put it, "Get busy living or get busy dying." I decided to shift my focus.

I think Katie's kisses also helped me on Tuesday. I woke her Tuesday morning and laid in bed with her, pillow talking. She rubbed my right hand, which was aching badly. I told her it ached, so the blessedly sweet child took my hand in hers, lifted it to her lips, and kissed every single finger. She takes my breath away sometimes, when the veil is lifted and I can see how raw and pure her heart is.

But, mostly, I think prayers have helped. Katie and I prayed for me to feel better at the end of our morning pillow talk, and then I asked for your prayers in my post. By late Wednesday morning, I felt tremendously better. Same thing yesterday and today. Almost so good that I entertained the thought of cancelling my rheumatologist appointment. And then I remembered that I can't avoid it forever and I am still having severe pain upon waking in the morning, so I'm sticking to my plan to see the doc on Monday.

Thank you for praying, and sending love and good thoughts my way. I'm praying for a relaxing weekend, a huge weight loss at Weight Watchers in the morning (ha, ha!), and relief from pain until Monday (at least). I hope y'all have a good weekend too!

Joint Pain

I haven't posted in a few days for a couple of reasons.

First off, we had a busy weekend. We went down to the campsite on Saturday to play in the river and on the playground, but we didn't camp because of the pending thunderstorms. We met our friends Beth & Sean at Incredible Pizza that night, and Katie and Ryan had a blast playing all the games. (The adults did too!) They spent the night with us, and Katie and Ryan tried to camp in a small tent in her room. Didn't last long, and they both ended up sleeping outside the tent. Sunday was LOTS of rain, so everyone decided to stay put and hang out at our house. Dan cooked a huge pot of white chili (still using your recipe, Maureen!), and we let the kids watch way too much TV. They were little TV addicts by the end of the day.

The other reason I haven't posted much lately is because I've been feeling pretty crappy. Remember the joint pain I've been mentioning for a while now? I thought it was the new bed we got, so we returned it and got a different one. It helped for a few days, but I'm back to being in pain almost every day. I seem to feel best between 10am and 6pm, when I'm most active. But the evenings and mornings are killing me. And when Jackson wakes at night, I can hardly get out of bed to go to him because my body is in such pain. Sunday night, he was up five times and every time I was almost in tears from just trying to get out of bed. Last night Dan was on duty, so I had to get up only once - when my alarm went off and the day started.

On Labor Day, the pain was so bad that I caved and said I'll go try my chiropractor as a last resort before going to the rheumatologist. (More on the rheumatologist in a moment.) The chiropractor adjusted me and did lots of accupressure on different joints and gave me accupressure tips I could do at home. He also started me on a heavy dose of fish oil called EPA-DHA 6:1, which is basically six times the EPA in normal supplements. From what I understand, studies show that a large dosage of it will help with pain. So I told my chiropractor that I'd try one bottle. After seeing him the first time, I felt better the next two days. But it hasn't lasted, even though I've seen him at least 3 times a week for the last two weeks. I still feel like crap, so I called my rheumatologist last week.

I saw this rheumatologist for the first time in January, after I got some routine tests to check things like my cholesterol and lupus "markers." After my parents' diagnoses (Mom's lupus and Dad's mixed connective tissue disorder) years ago, I've had my levels checked now and then to make sure I'm in the normal range. This time, I was a little elevated. So the rheumatologist ran some more tests, and basically told me I have the markers for MCTD, which is what Dad had. He said I may never show symptoms (I wasn't at the time, except that sometimes it was hard to open a jar of something - my grip wasn't as tight as it used to be), or it could be years until onset. He told me to contact him if I started showing symptoms, and said there's really nothing I can do to avoid getting MCTD. Great news, huh? I called him last week and I have an appointment to see him on Monday, 9/22. I've been avoiding it for as long as possible, maybe because I fear that if I go I'll have to start medication for the rest of my life, or because I fear I'll be diagnosed like Mom or Dad. I really don't want to go down that road, but now I have to admit that I can't keep living like this.

My body hurts, and I'm not enjoying life at the moment. I'm yelling at the kids (yesterday morning had all three of us in tears before the bus came, and I carried a residue of guilt on my shoulders all day long), and I can't pick Jackson up sometimes. I feel old and decrepit, and don't like having to take a break from my normal routine.

So... all of this is to explain why I haven't blogged much lately. (It hurts to type sometimes too, by the way.) And all of this is to ask for your prayers for me. I'm usually better at praying for others and not asking for prayers back, but this time I think I need to be the "taker" and not the "giver." I just need grace to get through the next 6 days until I see the doctor and can figure out what might be wrong.

Thanks, y'all! For listening to me whine and complain, and for your prayers.

It's the Bed!

Yay! It's not me! Remember how I posted about my achy joints and stiffness? We spent the weekend out of town and I slept on a regular mattress. I woke both mornings feeling 100% better! I could actually pop out of bed without having to creep-creep-creep and shuffle my feet until my joints got lubed up. I'm so glad! Of course, I still had a little bit of creakiness, which I think is just middle-age setting in. (Ugh!) It's the same creakiness I had back in May before we got the foamy bed. I'll gladly take that creakiness over all this pain and stiffness!

I called Costco and we can return the bed, so that's great news too. Now we just have to figure out how to stuff the thing back into one of our cars and get it back to the store. AND we'll have to figure out how to get a new bed at the same time.

It's almost like getting a second lease on life. Here I was, convinced I'd have to go see my rheumatologist again and start taking medication for the rest of my life. I felt like that proverbial trigger had been pulled, and I couldn't dodge the bullet anymore. So to feel better again is such a relief, and makes me realize how very lucky I am to have a healthy, pain-free, functioning body.

Thanks to those of you who left me comments with all your concerns and suggestions on things to try. I appreciate all the love!

Angels & Demons

Yes, that's the title to a Dan Brown novel (also my favorite of his, even more than The DaVinci Code). I digress. That's also the title to my evening with the kids.

Jackson is crabby. Katie is exerting her big sister authority. How quickly things go from this:

...to one throwing blocks at the other, and one kicking in retaliation. My, oh my. And to make the punting of her little brother worse, Katie then lied to Daddy about it. Since I saw the entire thing unfold from my post in the living room, she got in serious trouble for both offenses. Instead of the privilege of watching a show then reading two books before bedtime, the show and one book were taken away. What a swell day.

While we were treated to a full night's sleep last night, it didn't help much. Jackson hasn't been sleeping well for the last week or two. (Maybe because we started skipping the morning nap? I think I'll re-institute it tomorrow and see if that helps.) And I've had a headache all day, and feel like I can't make a dent in my To Do list. And it's been raining LOTS today. The list goes on...

To make it worse (and since I'm already complaining anyway), I haven't been feeling my best for the last six or eight weeks. I've been having joint pain and stiffness. Yes, I've been trying to ignore it because, really, I don't have time for an autoimmune disorder right now. And I keep blaming it on the new foamy bed we got in May. I keep telling myself that my body is still adjusting. (Ha! The lies we tell ourselves!) So, I just keep hoping that I'll wake up tomorrow and feel better. And that's what I'm going to hope again tonight when I go to bed.

Okay, enough of my crabbiness. Now that I've vented and gotten that off my chest, I feel better and I'm ready to go veg on the couch and finish watching the marathon 13 episodes of Mad Men that Dan has gotten me hooked on. It's starting to invade my brain the way Lost did when we watched the first two seasons on DVD, back to back within about a month's span. My friends started begging me to STOP quoting Lost characters and referring to them like old friends. I'm not that bad with Mad Men yet, but did you notice my sly use of the '60s slang "swell" above? Tee hee.