Monday, April 19, 2010

Lupus 1, Angela 0

So, I'll warn you now, for the next couple hundred words, I plan to whine, complain and wallow.  Then I'll pick myself up off the floor and go back to my positive outlook, but for just a few minutes, I need to vent.

I hate lupus.  Hate, hate, hate it.  This disease just sucks all around. I find it ridiculous that any diasease can take a healthy, active 32-year-old who goes to the gym regularly and is decently fit, and, overnight, turns her into a pain-riddled weakling who literally can't squeeze a lemon slice over her plate of fish.  No joke--the arthritis in my right hand is so bad today, I can't open a water bottle or button the tiny buttons on Aubrey's clothes.  I've got costochondritis, which is inflammation of my sternum, so it also hurts to bend or twist my body.  And then there is the lovely "butterfly" rash across my face and on my chest.

The joint pain  and other symptoms are awful, but I've become accustomed to those--they come and go fairly frequently.  But now it appears that the latest victim of my own immune system is my nervous system.  My feet and ankles have started itching, and sometimes tingling and burning like they are falling asleep. No amount of scratching helps with the itching, since it is a misfire of my nerves, and I can't make my feet "wake up," either, so I am forced to just deal with it--not so hard to do during the day, when I'm busy, but much more difficult at night, when I'm trying to sleep.  It also makes my brain not work as it should--I become forgetful, I can't think of the right word I need, I can't make my thoughts focus, and I seem like a total space cadet. I've become extremely weak in certain muscle groups, like my thighs and shoulders, so lifting anything heavy, like, say a 20-pound toddler, or squatting down or even getting up from a chair can be difficult. I get stabbing, burning pains in my thigh muscles out of nowhere.  And headaches, that are unfazed by tylenol or motrin, have become part of my daily life. These nervous system issues are troubling--it means my body has begun attacking something new, so I need to get it under control before the nerve damage becomes permanent.

I'm in the process of scheduling an appointment with my rheumatologist, who will undoubtedly up my daily dosage of steroids.  Oh boy! I'm already stuck with the side effects from my maintenance dose I take every day--they will just get worse once I up the dosage. I look in the mirror and don't even recognize my face anymore--it has taken on the round "moon-face" shape that all prednisone users get stuck with.  I carry extra weight around my middle that is "water weight" that no amount of time in the gym will ever get rid of. And I have the joy of knowing I am wrecking my bones and upping my chances of a heart attack by taking the meds.

My doc has been nicely suggesting I finish weaning Aubrey, so he can put me on a new medication, an anti-malarial that should help immensely.  I have a feeling he's going to move past suggesting and start pushing now that my symptoms are getting worse, so I'm trying to get Aubrey weaned this week. This makes me really want to cry--Aubrey is probably the last baby I'll ever nurse, so it breaks my heart to let go of this special bond.  And although she only nurses twice each day, she is very attached to it at those times, so it breaks my heart to have her cry and pull at my shirt and look at me like I'm being mean by not giving her what she wants. I know I need to do this, I really need to get on the new medication and get my disease under control, especially with the upcoming move and trip we're taking.  But I can't help but resent my body and this disease for making me let go of this before Aubrey and I are ready.

So what brought about this lovely flare I'm in right now? 2 things: stress and sunlight. I went to the park last week without wearing sunscreen on my arms--I forgot it. Add the UV rays to the crazy amount of stress I've been under lately, with the house up for sale, the impending move, and trying to plan a month-long roadtrip and facing 2-3 months of living out of a suitcase before our on-post house is ready, and you have the perfect environment for a lupus flare. It makes me so angry, though, that just being outside with my kids without lathering on the sunscreen can do this to me--I resent the fact that I can't just enjoy the spring weather with my children.

OK, I've wallowed and vented enough.  Time to let go of the anger and resentment about things I can't change, and move on, right? I tell myself, it could be much worse--which both cheers me and terrifies me. I am lucky to have a loving husband who helps out, sends me to rest when it gets bad, and still manages to love me despite my fat cheeks and water weight. I have 2 kids that adore me and that I love more than life itself, and they don't care that I have lupus--as long as I love them. So I'll focus on the blessings--and just keep praying God helps me with the "curse" of lupus.  

1 comment:

Becky said...

I'm so sorry you are having a flare up. Hopefully it will pass soon.

Want to hear more about the Pack?

Check out A Belly in Bloom, a page devoted to Angela's pregnancy with Aubrey. You can see belly pics, sonograms, and learn more about how Aubrey (formerly known as "The Bean") came to be the lovely little girl she is! You can also find Angela's favorite recipes and newest food experiments at Cooking with the Parker Pack.