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Tuesday, March 24, 2015

Touché Lupus, Touché!

Discoid Lupus is an annoying, painful, ugly disease. I normally have flares on my face, arms and neck. I'm used to having lesions there. Never thought the Lupus liked to keep things interesting. Gesh!
I woke up the other morning, completely, utterly drained, joints aching and muscles all stiff. It felt as though my blanket weighed 50 pounds. My arms and legs were anchors. I, seriously, had a conversation with myself if I really wanted to waste the energy to lift the 100 pound remote control to change the tv station. To hell with it! It's not worth it. I'll just watch the Snuggie infomercial.
At this point, I realize that I am having a flare. But usually when I have a flare, my Discoid rash is angry. There is nothing on my face. Nothing on my neck or arms. Hmm... Okay, whatever. So, I stayed in bed the entire day. I told my hubby "You know I don't feel good when I am not "farming" on my iPad.".
The next day, the back of my head felt like it was on fire. I went to rub my forehead...OUCH! So, I go to the mirror and notice a few spots at the top of my forehead but my hairline seemed really, really REALLY much thinner. Seriously! My scalp now? And taking my hair!
Not the best pic but you can still see the lesions.
UGH!!! Well, that confirms my suspicions, I'm definitely having a flare. It may not look like much but these small, raised, angry lesions burn and are quiet painful. Hurts to brush my hair. Rub my head. I am aggravated at this point. But then...I started thinking "Well, that explains my forehead but but why the hell does the back of my head feels like it was on fire?". Ohhh, this is why...
Upper part of the back of my neck (Does that even make sense?)
This is also new but totally explains the burning. (Hopefully that is the lighting of the pic and not gray hair because that would be the icing on the cake!) This flare is just so odd. I have never had it on my scalp or that far up my neck. The worsening of the fatigue is normal, feeling like crap is normal, joints aching so bad that I want to rip my arms and legs off is normal but these new areas are not. Medrol Dose Pack it is! Thank goodness my Rheumy gave me a Medrol Dose Pack to keep on hand in case of a flare. (My last flare, it took the Rheumy office 10 days to return my call. That's another story.)
So, Lupus, you have proven that you do have a mind of your own. You like to flare when I least expect it and you like to thrown in something new to keep me on my toes. As I said before, Touché!
Hugs!
Jenn

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Saturday, March 7, 2015

"It's noon and you're still sleeping?"

"It's noon and you're still sleeping?" I hear this a lot! Sounds terrible right? Well, I suppose to someone who doesn't have a chronic pain and/or chronic fatigue it does. On one hand, I feel guilty for sleeping in so late but on the other hand...not really. I don't know why I feel guilty. I think maybe because it is a stigma that you shouldn't sleep until noon. I don't know but I do know that I can't work anymore, the kids are in school and hubby is at work. So, really, why do I need to wake up at 8am?


I have a terrible time going to sleep at night. My mind races. I can't get comfortable. I can't lay in one spot for too long because I get stiff and muscles start to spasm. When I actually do fall asleep, I am either waking up with every turn because of pain, physically acting out my dreams and talking in my sleep. Oh, and of course, the restless leg syndrome/periodic limb movement disorder. Hmm...no wonder why I wake up feeling like I only had a hour of sleep!

Yes, when I said "physically acting out my dreams" is really what I mean. I have fallen out of bed twice because I woke up acting out a dream. (Bump on my head and swelling to my elbow. Great, what's next? Broken hip!) My hubby will wake me up sometimes because he says that I am reaching my hand out to hand something to somebody or I am trying to reach for something. Weird, I know.

Talking in my sleep is great entertainment for my hubby. He tells me that I will just start talking. He also tells me that we have conversations in the middle of the night and I appear to be awake but never remember them the next day. I told him "Well, I will never be able to cheat on you because I would probably tell you in the middle of the night." 

Back to what I was saying (damn fibro)...When I wake up in the morning (or afternoon) I have to make myself to wake up. I can keep sleeping and sleeping well into late afternoon. Recently, I have been making myself get up at 9 am but then by noon, I am so exhausted, I have to take a nap. So, am I defeating the purpose?


I decided to try Melatonin about a month ago. I am not one for supplements or natural medicine (except for medicinal marijuana of course) but it does seem to help some. Along with my other bedtime medications, I don't know why I am not knocked out. All the medicines may be the reason why I can just keep sleeping or vice versa?? Who knows!

So yeah, I do sometimes, majority of the time, sleep until noon. Am I depressed and that is why, no. Do I like it, no. Does it make me feel unnecessary guilt? Of course it does! But I feel, I am not missing out on anything. No one is at home in the morning. It is quiet and peaceful. So what is the harm?

Hugs!!
Jenn

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