Well so much for me getting me here every day in January, *sigh*. January has not turned out at ALL like I thought it would. HEH. But then again, when does life EVER turn out like WE plan anyhow? It’s been kind of one of those whirlwind health months again. I HATE those. I ‘ve AGAIN been to neurology, cardiology, general practice, Emergency, hospitalized, and a new one for me sleepstudy. If you don’t know what that is , they hook wires up all over your skull, put two different types of sensors in your nose, two types of sensors on the sides of your throat, a band on your chest , a band on your stomach, and a set of sensors on each leg. They then watch you with an infrared camera while you sleep, and listen in while you snore, toss, turn or talk if you happen to do that too. Come to find out that my nightmare sleeping jags of 20 hours for days on end are caused by sleep apnea. On top of the fact that I have heart failure and don’t have good O2’s meaning oxygen saturation anyway, because of this sleep apnea I only am getting 80% oxygen to my brain and body at night . And apparently my body has become quite used to it, because it doesn’t bother to wake me up about it, for extended periods of time. They showed me on the screen after the test, that it took a a good stretch for my brain to decide that no air was a bad thing before I kicked my legs and woke my body up. So I get to go back and do another sleep study WITH a pressured mask on to get me set up with that , and see if this will fix me up. I guess the REALLY frustrating thing is , I’ve had heart failure for about 10 years now, taken God knows how much medicine, they ‘ve hospitalized me, done MRIs , Chest XRAYS, CTS, painful test, after painful test, hospitalized me, monkeyed with ALL my meds , I’ve done chemo, and literal $10,000 dollar a piece treatments, and not ONE of these doctors had the thought that ONCE, just ONCE that I might have needed AIR?!?!?!?!??? Good old OXYGEN?!?!?!? As my Daddy might have said, “Good Lord , the nuts are running the nut factory.” So not that this is going to CURE my heart failure OR my lupus , but it certainly is a HUGE stride towards seeing what’s going on with my body! Plus you know how I blogged that I felt as if my brain never shut off, that the thoughts continually went round and round, 24/7/365 , even in my sleep? Well, the funny thing is , NOW I have PROOF. They showed it on my brain wave reading. The nurse/tech told me, and I quote, “You have the strangest EEG wave sleep pattern I’ve ever seen . Almost freakish. I can’t wait to show it to my boss. I’m sure he’ll be intrigued. It’s like your brain never shuts off.” LOL 🙂 So it seems everywhere I go , I some weird test case, and people want to look at my file. Maybe I should start charging people to WATCH ME, LOL 🙂 (here’s to being the odd one out~ Jeanette)
Okay, big breath before this post. I always say that when I know in my brain that the things I am about to say are liable to offend someone somewhere in the cyberverse. But I have never shied away from telling how I really feel, (just ask those of my family or my true friends 🙂 It’s not really a bone to pick , or a soap box issue , it’s just something I want to bring up. See, I run a lupus page on FaceBook. I will have been running it for a year in November. Yay , me , right. Well, I guess. I mean , I’m not tooting my own horn , like Johan on that ridiculous coffee commercial. But I follow a lot of other lupus pages as well and have made a lot of friends from all over the world and it’s great fun. These are all positives. But I want to say something else too. For those who read my page, they see that I post positive and funny pictures . My goal is to get people to laugh and maybe forget for one minute that lupus is part of their life ALWAYS. But let me back up a minute, Don’t be fooled. Don’t mistake what you see for what is REALLY happening in my life, okay? I am 34 soon to be 35. I’ve had lupus for what they think is nearly 20 years diagnosed for almost 16. It attacked my heart causing congestive heart failure. I only have 30% function of it. It attacked my joints where every morning it’s agony to roll out of bed. It’s attacked my nervous system and brain causing something called dysautonomia where your nervous controls are fried , and you have no control over your heart rate or brain activity , so that without medication my resting heart rate might be 155, and I could have a seizure or some other event. I suffer from fatigue so severe that walking from the sofa to the bathroom can cause me to feel like passing out. I can’t drive, cook, clean or shop. Am I telling you this because I want a pity party ? Do I want you to come crawling out of the wood work with comments saying “You brave soul!” NO!! The exact opposite. I didn’t DO anything to deserve this. I got a lousy genetic deck of cards. But it ISN’t ANYone’s fault. And I refuse to give into pity! People have accused me of being in denial, “You should be angry!” Why? At who? It’s life. People suffer horrible things everyday. Why should I say , “Why me?” Shouldn’t the question be, “Why NOT me?” AM I EXEMPT somehow from human suffering? And tell me something else , Does being angry help? Does taking my emotions out on those who care about me, the doctors, hospital personnel or even complete strangers on the street, help me in any way? Will it help cure my lupus? Will it bring a spark of joy anywhere in this already VERY dark world? No,I’m not being a PollyAnna , and I have days where I cry my eyes out too. But , it doesn’t consume me. On the days it seems too much , I just remind myself, it came to pass, it didn’t come to stay, and take it one second, not even one minute at a time. I SMILE. Ask about someone elses’ problems, you might be surprised and humbled, and find out , yours might not seem so bad after all.