About Me~, Uncategorized, Writing

Scrambled~

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Ferris wheels. I used to really , really love Ferris wheels. And roller coasters. I loved the up and down craziness of riding The Scrambler. The Flying Swings. Amusement parks were a ball, and I couldn’t wait to go every year with my Daddy to the company picnic to the big park and ride with him . I went with my friend James and tried to get him to go on the double looped Arkansas Twister with me, but he just stood on the ground firmly  in his wore out cowboy boots and swore that ‘s where he’d stay with his eyes closed , and pray until I was back on the ground  where I belonged .  I used to love to go to Hot Springs , Arkansas and ride the elevator up  Mountain Tower and stand 216 feet above the Ouachitas and look out over the heights and feel thrilled.

But then one day, I got very  sick. I had been pregnant, and I lost the baby . We found out it was because I had lupus .  My body turned into this alien thing that I didn’t recognize. It BECAME a Ferris wheel I couldn’t get off of. Around and around I went. I was on The Scrambler, screaming for the operator to let me off. I’m on the Arkansas Twister , but I’m stuck in between the loops, where there’s no solid ground for me to get back to. I know James is praying for me  somewhere, but I can’t get down again. The elevator refuses to take me off the Tower anymore. It’s been a long time since this horror park first started . I had a few years where I was lucky , and had a period of remission. Those were glorious times.

But the roller coaster has started back up again . I’ve had to go back on the steroids , the anti malarials, the high level Vitamin D, the major pain killers , and spent most of this week in either a state of insane insomnia, crazy fatigue, with my mouth covered in burn-like ulcers, my stomach in  toe-nail churning nausea, or  my body bent over in mind-blowing joint pain .

I no longer go to the “real” amusement park. I don’t find anything amusing in that anymore. My body is “Scrambled” enough. I am starting up the Mountain again, with a new rheumatologist. The one plus is , I really like this one, she seems to be really educated, and very compassionate. I can only pray that the view from the top of the Tower is worth this particular  ride in the elevator .

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About Me~, Writing

Fortune Favors the Prepared~

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In searching for inspiration for writing this series on lupus awareness month, I’ve thought back to many of the things that I have experienced, and many of the things I have learned that have helped me cope.  I suppose that is really one of the things that I have to be most grateful for, lupus has taught me more in my 36 short years , than some people would ever learn in a lifetime!  

  Today’s tip has to do with hospital trips.  As lupies, we unfortunately have more than our share of doctor and hospital visits. Since I was young I’ve been hospitalized every year , at least once. Most years , many more times. A lot of the time it would be a rush job, and we would leave the house  snatching this, socks, toothbrushes, extra underwear,  items flying through the air in hopes that they would reach the suitcase as we ran for the van , and out the door.  Finally , after lots of visits where we ended up with no pajamas, or shampoo, we decided we’d start packing me a “just-in-case-bag” . You know , (Just in case I have to hurry to the hospital!) .   😀  

  Now everyone’s just-in-case bag will be different, depending on what YOU need when you go, but here is a typical list of the things I pack:

Things to Pack Just in Case 

1. One extra set of clothes for each day you plan to be gone , five is good ( if you’re like me , you DON’T want to live in the heinie -showing hospital gowns)

2. In gallon zip-loc bags ,roll  your underclothes and socks for each day( I like fuzzy character socks!)

3. A toiletries bag with your favorite shampoo and bar soap ( cause let’s face it, hospital brand soaps SUUUUUCK!)

4.  One word  – DEODORANT – ‘ NUFF SAID.

5.  A really, really, really, REALLY comfortable nightgown.  This is in addition to the clothes outlined in line 1. 

THIS is for sleeping.  The I’ve had-thirty-different-kinds-of-blood-tests-sleeping.  

6.  Breath mints, gum, jolly ranchers, blow-pops, ANYTHING to keep your mouth from feeling like the Sahara. 

7. HAIR STUFF–  Yes, I said, “stuff”.  A hair brush, gel, a comb, bobby pins, an elastic band, hairspray, whatever you need to tame your hair into some semblance of normal and NOT the Creature from the Black Lagoon, trust me, you will be GLAD you did this.

8. Chap-Stick-  or Blistex or Carmex or whatever you use to slather on your lips, heed me when I say……..”BRIIIIIIIIIIIIINNNNNNG IIIIIIIT”   your lips will be eternally grateful, I promise. 

9.  Art paper,  pencils   or   a   book to read,   and yeeeees, I know, people have tablets now  (don’t get ahead of me!) for that kind of thing,  but there is just something soothing about the feel of REAL paper!

and last but not least……

10.  Your tablet.   For messaging, checking your e mail,  instant messaging,  and yes even keeping thousands of books on your Kindle app, it’s hard to beat Amazon.  

So I hopefully this will give you some ideas to pack up your bag , BEFORE your next rush-job hospital visit! Love you guys!

  So there ya’ go, my go – to list   of    must-have   things  for hospital visits .   I hope you guys find it helpful.  But hopefully , NOT  in the near future, ya’ know…………………lol       😀         

Uncategorized

BACK TO THE CAVES WE GO~

I would like to start this post by saying, that ANYONE who knows me, knows I don’t get offended easily.  Pretty much anything , anybody says, just rolls right off my back.

However, I just recently read an article , with MEMES to go along with it, that just totally rubbed my fur the wrong way.

And once you read it, I am fairly sure you will feel the same way.

To start this off, I always thought the idea behind childbirth was to have a HAPPY, HEALTHY child. One for the parents to love, and one to love the parents.

WELL, this fella ‘ here has just set childbirth, and childrearin’ back 100 years and caused a great deal of unhappiness between women. When you read it , you will understand, and be just as outraged as I was.  Seriously, this man is half a bubble off of plumb, a donut short of a full box, and as my Daddy would say, “His bread’s in the oven , but the gas ain’t on. ”  The word chauvinist doesn’t even BEGIN to cover it.

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Because apparently , those of us who had C sections are INFERIOR.

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Because , apparently, we didn’t REALLY LOVE our babies, we are just selfish for making  different choice.

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Because apparently , we’re just drug-addled women , who are lazy and chemically dependent.

So we have no business having doctors interfere in the “natural” process of birth, even though our children came early and would have died without medical intervention.  We’re just lazy like that.  Needless to say, I refuse to feel sorry for my childbirth experience , as my sons are 16 and 14 and are completely healthy , despite the fact that (SHOCK AND HORROR!!!!) they were both born by Ceasarian section.

So perhaps there is hope after all!

Uncategorized

Let’s Make It a Date~

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I had quite the entertaining date with my hubs this evening.  It was was all very romantic,  plush couches, with fringed throw pillows, thick carpets, mahogany end tables with the perfect amount of mood lighting. Great conversation, along with plenty of our favorite thing to do, people watch.  What’s surprising is where our fabulous date took place.  The cardiologist’s office! Bwhaha. I kid you not. My cardi’s office is seriously cushy. It’s not like most of my doctor’s offices.  I mean , honestly, no offense to whoever designs these places, but I have a sneaking suspicion that there is one huge firm that designs ALL restaurants and medical facilities. The same paint schemes,  ( grey-green , orange-tan anyone?) , the same plastic -coated sets of pictures ( black and white trees,  bowls of fruit)  and DEFINITELY the same furniture, ( aluminum -spindled chairs , fake -wood desks, and faux post-modern paintings) .  Doesn’t really inspire a sense of well-being you know?  I wonder sometimes if they have ever actually asked the patients how these settings make them feel?  Believe it or not, the colors on the walls, the paintings, the chairs all have huge effects on our sense of well-being while we are there.  If we have to wait for very long in a stressful situation , a grating color on the wall , can become physically annoying.  An uncomfortable chair  can make a 15 minute wait seem like an hour.   I don’t think life is too busy to make beautiful! Especially the places where people are in the most pain.  Hospitals, medical clinics, doctor’s offices, and emergency rooms. These are the “glamorous” places I’ve been on for dates with my husband in the last few years.  We’ve managed to have some pretty chic get-togethers  , grey -green walls and all.   🙂

About Me~

Something in the Air~

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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)

About Me~

The Hand You’re Given~

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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.

About Me~

Puttin’ On My FIghtin’ Panties~

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Wow. What a whack a doodle weekend. Well actually two whackadoodle weekends in a row. I have never been so sick of hospitals , nurses ,and doctors in my whole life. The funny thing is the two weekends could not have been more varied. Last weekend 4th floor of the hospital, I got nice nurses, wonderful doctors, awesome treatment, everything explained in execellent fashion , all gold stars all around, diagnosis of extreme dehydration , complete weakness , body gone down to the bare nubs with a viral infection. So last weekend, I got antibiotics , tons of fluids, and treated very well with much rest and respect. This weekend, I get an Emergency call at my home at 7 pm saying my labs were seriously out of order, my INR clotting factor needing to be a 2 and was a 19, so basically I could bump my leg and bleed to death. GET TO THE HOSPITAL TO BE ADMITTED ASAP> 2nd floor nurses, not so awesome, couldn’t get their junk together , total spazzes, tourniqetted up my arm , but forgot that you need vacutubes BEFORE you draw the blood and just left me wrenched up that way, while she went to get her forgotten tools. In and out , up and down all friggin night, no sleep , Then the doctor decides he doesn’t have to come in to speak with me, and can just order his lackeys to basically come in and run me over roughshod with a bunch of tests that I had already had once , that he wanted repeated for no good reason. But the doctor didn’t want to plan a plan for my care just go all willy nilly. Well I lost it. For one thing they all talked OVER me or AT me instead of TO me, as if I were a mindless vegetable in the bed. I guess my righteous lupus indignation rose up and I proceeded to have a lupus hissy. I said , You do not talk to me like I am stupid. I am right here, and if you want to do something you talk to ME. These tests were done once, why are we repeating them? And these nurses, all night, in and out, couldn’t get their gear together, I got no sleep. For NO reason. THEY ARE supposed to KNOW their jobs. So until people can get their crap together , and get me a coherent plan , don’t come talk to me. They all looked at me like I had grown a third head, but seriously! Lupus has fried my body, NOT my brain! I am sick not stupid. And when your doctor comes in and just doesnt’ really inspire confidence that he knows what is going on with your VERY complicated situation, you don’t just sit there and think , “Hmmmm, should I put my life in this guys hands or what?” “Let me think, hmmmmmm?” I THINK not!” Well, today the nurse must have told him what I said because he was totally different this morning, very deferential. And I HATE being a bully, but DAGNABBIT, this is their JOB! People’s lives hang in the balance. This isn’t checkers, folks. Get it right the first time please. Or I promise I WILL put on my LUPUS fighting panties and go at it with you . It ain’t purty , but it gets the job done. I’m thinking of giving lupie assertiveness classes , seems like there may be call for them, lol Love you all ❤ 🙂 and as always (hugs) ~ Ruby Jeanette