The Phoenix

The test results are back…my mom’s at least. Her heart is fine. In fact, the cardiologist said she may have ten or more years left. Why she’s getting short of breath is still a mystery.

I myself  had been doing pretty well, the collar bone had healed, and I finished physical therapy, but the arthritis pain (presumably from the Lupus) is back full force, and I’m having a lot of muscle pain now as well (from the Dermatomyositis). I’ve had slight muscle weakness, so I was used to that, but now I wake up and go to bed with a lot of soreness and I’m having killer charlie horses. It doesn’t matter that I’m not exercising except for a short walk in the evening. It doesn’t matter that I’m eating a banana and take a multivitamin everyday so I get potassium. I’m still getting really sore muscles and bad muscle cramps.

I keep going back and forth between throwing myself pity parties and trying to be all strong, acting like I can handle it. I can’t handle it. I went to the doctor today and after pressing on my joints, she’s raising my prednisone to 30mg/day, took a bunch of blood for testing, and she’s going to see if she can make a good argument to the insurance company to pay for Rituximab. Since the IV IG treatments lost their effectiveness over time, we’re not going to try that again for a while. Hopefully, the Rituximab will be as effective and remain effective for longer.

In the meantime, I’m dreading taking 30mg of prednisone each day which I’ll start doing tomorrow. It makes me moody, sleepless, and will make me want to eat everything in sight. I’m just starting to get my weight back down from being laid up this summer with the broken collar bone, so this is definitely a setback.

I know the name of this blog is God’s Grace Is Sufficient, and I’m coping, but my quality of life is not so great. I’ve been praying for many years for healing, but it hasn’t happened yet. I know it could be worse, and I try to take comfort in that, but there’s this part of me deep down inside that sometimes longs to resurface; it’s the part of me that used to be energetic, flexible, strong, the part of me that used to chop logs into kindling, the part of me that could hike through the Ozarks for several hours straight, the part of me that could do perfect cartwheels and pick up 25 pound bags of dog food with ease.

I just wish sometimes that this defective body could crack apart and my old self could emerge. I know that sounds odd, but it feels like this body I’m inhabiting is foreign to me. Even though I’ve been attached to it all this time, I still find it hard to believe that the woman who was so healthy and active is now trapped in this body. Sometimes, I just wish I could cast it off, throw it into a huge bonfire, and fly away.

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