One thing after another...
It has been such a lousy month! A day or so after I last posted, I noticed my eye was bothering me, but didn't think too much of it. Next morning, my eyes were stuck together. Pink eye!! Which wouldn't have been so bad, I got drops and it should have been over. But this is me...not only did I have light sensitivity with it, but going on the computer or watching tv made my eyes hurt terribly. Reading didn't feel all that wonderful either. I still worked, but pretty much went home and went to bed. What else was there to do?!
Then, as soon as I started to feel better, I got re-infected!! I think maybe the drops were not as effective because a couple times I used them along with my Restasis, and I don't think I was supposed to do that. Or another kid gave it to me again, which is totally possible. (And I'd kind of rather blame a kid than myself, lol)
Okay, so I started to get back to sort of normal and guess what? I got H1N1 I got the vaccine, but got sick 9 days after The vaccine takes effect 10 days - 2 weeks after injection. I wasn't as sick with it as I expected to be, although it was pretty bad. But considering I knew someone who died from it, I expected considerably worse.
I should have known. Once the flu passed, it triggered a lupus flare similar to how I felt when I was first diagnosed. That's where I am right now. I missed a full week of work and just went back yesterday. I am really struggling.
To make things even more interesting, the primary care doctor doesn't know exactly what's going on with me except "it must be lupus" and wants the rheumy to diagnose this. Which makes sense, and I had an appointment. Unfortunately, the day before my appointment, the receptionist called. The rheumy has the flu!!!!! Fortunately, she's coming in tomorrow and I have an early appointment. Thank goodness!!
So what I'm dealing with now is breathing trouble - tightness, dry cough, and wheezing if I walk around. Lots of pain, and I'm usually good at blocking/ignoring pain. This is more than I can ignore. My left hip is terrible, almost constant pain. Under my rib cage on both sides, especially the left, is very painful. I've had a headache in the back of my head since I first got H1N1 days ago, it never stops and the pain radiates to my neck most of the time. I'm always nauseated and bloated, and my throat feels tight, sort of like the goiter is getting bigger. My ankles are very sore, and have been for a couple weeks. And I've had a fever that still hasn't broken. From the reading I've done online the last couple of days, I'm wondering if I might have sarcoidosis. The PCP said I very well might, but it's for the rheumy to diagnose.
I have been feeling like such a failure. I was doing great, I was in remission for over 3 months, for the first time since I was diagnosed in 2006. I had a life again and felt good. Now it's gone and I feel awful. I know this will pass, but when? And what will it take to get there? I've gained 30 pounds this year because of my own stupidity. If I go on prednsione, which I know I need, I'll probably gain more. Or, what I suspect the doctor will do is put me on methotrexate. She warned me that she treats flares aggressively. I can barely do my job the last couple days because I feel so ill. I had to teach mostly from my desk and that's so not me. I walk like an old woman, and had to ask a couple people to make copies for me because I just couldn't walk all the way to the workroom. I couldn't go to church last week, and I probably won't go this week, and that's a huge support system for me. I hate, hate, hate being sick!!!!!!!!!!
If you're still reading this novel, thanks ...I've been wanting to get back here for a few days now, but didn't know what to say. I guess I found the words now.
Lupus, you have no chance!
Love and hugs,
(mom to my little Chihuahua, Brandi)
Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.