YEP. That’s what I said. I have AMAZONIC GORGONIA PURPLEITIS. It’s this horrible disease. Bizarre condition , really. Your own body does horrid things to itself. Like snacks on it’s own heart, or even your brain. You can lose your faculties. First mine decided to make my heart the main course , so I have 30% function of that. Then it decided my ENTIRE nervous system looked like a great after dinner snack. So it went amok through there. So my heart rate my go 155 with me lying completely still. Or it might tell my brain to just shut off while I’m standing up. “So you’ve been to the AMAZON ya say?” No actually it’s this buggery disease called Systemic Lupus Erethemetous , and hundreds of thousands of people suffer from it all over the world and there is NO CURE. But it seemed like everytime I told some one I had lupus there brain immediately went either somewhere else, their eyes glazed over, or they looked at me and went , “WHAHHHHAAT??” So I just decided for once I was going to call it something SUPER WEIRD and see what kind of reaction I got. Or if I started off with the symptoms instead of the name and said it in a super horrifying tone, would people be more interested, “AS in did you know LUPUS is actually the ZOMBIE of the disease world??” THAT might get their attention , as in we are literally the WALKING DEAD of the famous telly show? What we have affects more people in the world than you could ever imagine and practically NO ONE has heard of it. So I don’t know if we need to change our name, our image or what, but for today, I shall have AMAZONIC GORGONIA PURPLEITIS ……for the thrills, after all life is so short ,I take my fun where I find it 🙂
All things morph over time. People , places , houses, the smallest things in life, never remain the same. Even my blog has morphed over time. I’ve actually been blogging for about 5 years now , back when Yahoo 360 had a blogging service. I have copies of those posts somewhere too. I’ve always been optimistic, I’ve always written poetry. I’ve always been outspoken. Those things haven’t changed. I can’t say what someone from the outside looking in would say the changes have been, but if I had to say what the changes were in myself, I would say , that maybe I am more open minded. I am more compassionate, and less judging of others. I’ve learned to have more fun with things that happen , and to definitely find more humor in life. I would hope my writing has improved in the 5 years, but I couldn’t say that for sure either. Change used to be a really scary thing for me, I didn’t mind being in a rut. Ruts are comfortable. But I used to have a preacher friend of mine say that a rut was nothing but a grave with both ends kicked out, so I suppose graves are comfortable too. Since chronic incurable disease has come into my life, change has become an immutable part of my life. I never know what one minute, one hour , one day will bring. So you learn to morph or die. But really ALL of life is that way, and people don’t realize it. You have to change. You can’t sit still. I know people are really into zombie movies and all this prepping and survival and all that kind of stuff, but really all that is fantasy compared to day to day life. Day to day life is much more important . THIS moment is all we have. THIS second. So worry about the changes you can make in your life right this very minute, and we’ll worry about the zombie invasion later, k?
Advance warning~ Slightly grouchy, glaringly truthful post ahead……
DAY ? ~ Whatever……..
After Thanksgiving, before Christmas. LETTER? X. What does the X stand for? I used to hate that in math. No. Today? The X is for the X in explanations. As in, explaining every day. “No. I don’t feel better .” “No. I don’t know when I will.” “Yep. I still have lupus.” “No. I don’t know when it will go away.” “Yes. I’m still tired.” “Yes, my hair is falling out.” “No, I don’t know when I can get off of the chemo.” “No. I don’t feel like, going out, visiting anyone, cleaning house, having company, cooking dinner, attending church, or even combing my hair.” I go ONE time a week to the grocery store, and it takes a WHOLE other week to recharge to do it again on Friday. If you throw a couple of mid week doctor appointments in there, then I’m no good to anybody.
I am totally NOT trying to sound cranky. I know everyone really genuinely wants to know how I am . But , I just don’t have any new NEWS.
Not a cold.
This stuff KILLS people.
The medicine designed to help , makes my stomach come up, my hair fall out, and my body move like Vermont molasses in January.
I was sick yesterday.
I’m sick today.
Barring a miracle,
I’ll be sick tomorrow.
And the bad thing is, as much as you love me, and I love each and every one of you, there is NOTHING you can do. You can pray. That’s it. I just don’t know what else to tell you. I could make it easy for everyone, I guess. I could say, “I’m fine.” But, it’s just not true. I’m not okay. I don’t know when I will be. But I love you all the same. Just let me breathe. Let me heal. Let me rest. Let me cry. Let me stay at home. Let me be the crazy , tired, goofy , grouchy, oddball I’ve always been. And I promise, when they announce a cure for lupus, I’ll be first in line. First to get it , and first to shout it from the rooftops!!
Thanks for being here for me through the walking dead stages……..love ya! ((HUGS))) 🙂