I’ve been having a hard time lately. This whole idea of being. Every day. All the time. Forever. It’s been a little harder to swallow these last few months.
After pushing everything way too hard for about 6 weeks (due to work, loved ones in the hospital, school…) I had my worst flare ever. This was in March, and I went on Prednisone later that month simply because I couldn’t focus enough to do my classwork and was about ready to drop my class. (The pain and everything was manageable.) My brain fog cleared and some of the pain is gone, but I feel like I haven’t gotten over it yet.
It might be due in part to a few bad doctor’s appointments. I saw my cardiologist, who is not my favorite doctor anyway, and he didn’t think there was any problem with anything even though my docs who I work with regularly thought there were things to be concerned with. I told him fatigue was my main symptom and he replied, “is that all?” Yeah. I can’t stay awake more than 6 hours and sleep 16 hours a day. That’s all. I did a tilt table test and passed out in 4 minutes without drugs. (Normally it takes a few hours.) He wasn’t concerned though.
Then I went to see a new doc, who is a chronic fatigue specialist. He’s fine and was well-prepared, but I left really discouraged. I think because he had nothing good to say, gave me a zillion more pills to take (I’m pushing 40 a day now, without pain meds) of if it’s because he talked to me like a sick person. Granted, I am, but it was a little off-putting. “This is caused from the stress of being sick and worrying about it all the time.” Things like that. In hindsight, it’s not that bad, it’s just not anything anyone else has said before. Basically, his verdict is that being sick is making me sicker.
The Justice League, my team of super-hero doctors- continues to quest for a solution. What exactly is the “and?” In the mean time, I continue to sleep through my alarm on a regular basis, sleep 12-16 hours a day, hurt most of the time, and I’m pretty sure if I die soon, it will be from choking… on my pills.
I think Louie has matured and gotten older. He’s no longer a baby, easily quieted with a little Plaquenil and an afternoon nap. Now he’s 6, and running rampant whenever he feels like it. I sort of dread the teenage years (which is funny because anyone who knows me knows I’d hang with teenagers rather than kids anytime.)
All of this just leaves me tired, and sort of worried, sometimes sad, unsure of what the future holds, confused, lonely. I want someone to help me, but no one knows how. I don’t want to talk, but I want people to understand. Are you seeing the flaws in this logic?
Maybe someday, they’ll have an answer. Maybe even a solution. Maybe.
Until then, it’s just me and God I guess. As if that isn’t way more than I could ever need. Tonight I was reminded that I offered my life to Him years ago and several times since. When I did that, I released control.. And, I offered it to Him for His glory. I believe, and have felt this way since the day of my diagnosis, that He can and will use Louie for His glory. People will see Christ through my life with Louie. That’s all I can ask for.
