Saturday, April 20, 2013

What is Lupus - To Me?

Here I sit in my living room. The lights are off and the front door is propped open. It's quiet. Such a nice sound. JJ's down in the yard playing. This is a normal thing. But it's still amazes me how I can never let my kids play outside alone for very long without feeling anxiety. That must come from my years and years of being a babysitter and nanny. Letting the kids out of my sight was not an option. It's interesting how some things just carry over. Anyway, Leif has Jakob and Caleb out in the hills with his parents and some friends shooting guns. I usually go with them. But not today. I just wish I had the strength to enjoy my life. To go forth and do. Too often I'm not able.

Yesterday the boys and Leif were all playing outside with their new Nerf laser guns. Jakob actually stopped and tried to get me to come and play. Truth is, I would have loved it. And sometimes I just push through the yuck and go out and play. But sometimes pushing isn't an option.

Sometimes my head hurts so bad I honestly worry that my eyes might dislodge. Such a lovely image, I know. Other times it makes me a little queasy. Most of the time it just hurts really bad and I go until I have to stop and cover my eyes with something that blocks the light. I feel like I am constantly monitoring what medication I have taken - need to take - or can't take.

My throat is raw. The sores have rotated locations throughout my throat and mouth for a few weeks. I've stopped counting. It hurts! Think Strep Throat that doesn't go away. And then take away all medication options (because it isn't a virus or bacteria or fungus).Last night I finally had a possible breakthrough idea. I lathered my throat and lips in Hydrocortisone cream (steroidal). This morning they felt a little better. Here's hoping. I've found that this helps with the rash on my face too. Always nice to find something that helps.

Weak. My body is weak. The combination of fatigue-pain-and fluid retention creates a weakness that is wearisome.

Have you every had to use a blow dryer set on high to get your feet to warm up? I have. At least once every day my feet become so cold that I am forced to stop and warm them. I have found that a blow dryer or a bowl of hot water works best. And then I usually realize that my hands have been as cold as my feet. Lovely!

I have things to do. So Much To Do!! We are supposed to move across the country in one month. How I wish I could do all of the packing and organizing that my heart and mind desires. Instead, I set the goal to pack at least one box every day and I celebrate if I am able to do more. Thanks Heavens (truly) for Leif's strength, motivation, and availability that makes it possible for him to do more then me. We would be lost without these blessings.

Well, there you have it. A little cry fest right from my very fingertips. Now I must leave you and close my eyes. Thank you for loving me through my weakness.

No comments:

Related Posts Plugin for WordPress, Blogger...

Popular Posts