Walk a mile in my shoes. Is that the phrase? I wouldn't wish this on an enemy. This illness is an conundrum. Its not as straight forward as let's say regular Lupus is. Lupus with kidney involvement or lung involvement. Or for those whose labs are clear cut. APS and cerebritis are an enigma because the Central Nervous System is a mystery. Not that one or the other are more or less serious. I'm not saying that at all. Please don't think for one moment I am saying anything of the sort. My MRIs are crazy. They show strange stuff going on. Demylenation, vasculitis, etc. My brain goes wacky. That's the only way I can describe it. Lately more so than ever things are becoming more and more odd for me. My facial expressions are off. Gary says I make weird faces. I cannot form my words properly. My hands just jerk and shake all by themselves. My body twitches more than it ever did. I feel like I need to twist my head from side to side. I get confused easier. I have more seizures. My tongue feels like it doesn't belong in my mouth. And then I am perfectly fine. But all the time I have this underlying headache. What's the most horrible thing about all of this is that they don't know what to do about it. The doctors agree there is something going on. They increase my meds. Take a wait and see attitude. I just went for more blood work today and go see my neurologist next week. I will be asking for a spec scan. It will be able to show the vasculitis. No, I don't want anyone to walk a mile in my shoes. It's easy to understand stuff when it's clear cut I guess. When it's something that is easy and straightforward. It's sort of like "But you don't look sick" ! Why when it comes to the brain are people so quick to make judgements about you?
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((((((((((Lu dear)))))))))))) I am praying for some better days ahead for you, dear.
loving you
karyl
It is so hard to understand what you can not see. At least with something like a broken leg, people can see a cast and know that the break is there.
(((((LU)))))
With Love, Loretta
My Luanne,
Your brain looks very well today. J/K I have known the mind problems. I would rather lose my entire body than my mind. I have thought of that many times. And I certainly dont like telling everyone about the vasculitis on the brain, etc,. I tell them nothing about it. I admit, I get embarassed on those issues. Then I wonder if they look at me like Im retarded. Are they questioning my mental capacity? Most of my disabilty comes from the things they have found in brain scans and written tests I have taken and was quite honest on. No, not all from lupus, but some of it is. Yes, I am slow! Yes, I am depressed! Yes, I get confused! Yes, I could blow a vessel, and have to stay calm all the time 24/7. I even wonder if Ed would put me away in a home if I gave him that much control. Too much to wonder about huh? You got braver than me on this one Luanne, but thank you for saying it for all of us. I do wish theyd live a day in your shoes though Lu. Maybe someone would help us finally. And then, there are those who we cant tell anything, it depresses them. Something needs to wake them all up to see. Call me cruel, but I say let them suffer with what you have, but only for a day. Theyd be the better for it I think. See how much we have learned from our lupus? Theyd prob be glad of it. Who knows?
Love You Bunches,
Mariann
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