About Me~, Writing

Fortune Favors the Prepared~

lupuswingsofsteel

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       😀         

About Me~

Puttin’ On My FIghtin’ Panties~

purplefairy12

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

About Me~

Side Effects~

medicalbook

Be very careful of reading health books. You may die of a misprint. ~ Mark Twain

Ha. I love the wisdom of Mr. Twain. And I have found so many of his quotes to ring true. Possibly none truer than this one. It also applies to listening to the health advice of others. Trust me, when you have had a chronic disease for 15 years , you get used to hearing all kinds of ideas from all kinds of people. For some reason , even complete strangers feel entitled to tell you what you should be doing with your body . “Oh, you have lupus?” “You need to drink vinegar mixed with the toenails of a Brazilian tree frog while standing in the shower on the third Thursday of each month!” or, “My cousin’s aunt’s daughter’s nephew’s boss has that. She has this great doctor who prescribed this drug you can get, and it cured her!” And on and on it goes. You wouldn’t believe the things I’ve had people tell me. I used to get really upset, because when people say things like that, they make you feel like you aren’t “trying” to get well, or that you are “enjoying” being sick. Sometimes it made me feel angry , because it made me feel stupid, as in “Oh, ask my doctor about new medicines?!?! I would NEVER have thought of THAT on my OWN! But after 15 years, you begin to realize that people really just feel helpless. Especially your family , and those close to you, who want so badly for you to be okay. They see you in this terrible pain, and don’t know how to help you. They see that your body is turning against itself, and turn to whatever seems like a quick fix. And it would be wonderful if it really worked that way, but unfortunately it doesn ‘t. As this point in time, there aren’t any “quick fixes” or really even any “slow fixes” for lupus. Basically , we’ve got Band-aids. We use the Band-aids to keep us patched up and going as best we can. Of course sometimes all I want is to use the Band-aids to cover up people’s mouths when they are offering their “help”, you know. So, if you have lupus like me, and are getting unwanted advice, try not to take it too seriously. But also know that just because you love these people doesn’t mean you have to apply their advice or suggestions! You can certainly take Mr. Twain’s advice. So you don’t “die of a misprint”.

About Me~

Zombii ~ ( I ARE ONE)

ZOMBIES……………

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.

I’m SICK.
REALLY SICK.
It’s lupus.
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))) 🙂

About Me~

I Made It~ (to church that is….)

Well, I must brag on myself just a little bit. I made BOTH sets of church services today! Whoo-hoo! Now for those of you who might be new here to my blog, I will explain why that is exciting. (For me, anyway 🙂 I have been experiencing some not-so-fun effects of the lovely auto-immune disease I’ve got, called lupus. It has already attacked my heart causing all kinds of great things to go on , and NOW it’s decided that Hooray! Lungs sound good for a snack! Ugh. So bring on the chest pain, trouble breathing, and wheezing. So , anywho, needless to say, I have NOT been a very chipper camper lately, and haven’t felt much like going to church, ( go figure.) Which actually really sucks, ’cause I like church. I like going and seeing everyone, and getting a chance to visit with them, and just kind of recharge ya’ know? To kind of just sit down, and go “Aaaaaahhhhhhhh.” And when I miss that , because of not feeling well, it makes my world seem that much smaller. So to actually make two services in a day feels like a huge accomplishment to me! People who suffer from any type of chronic illness or disability will understand, I know. Hey, when going to the grocery store is GIANT check -mark on your bucket list , you ‘ll know what I mean. So, anywho, I have a cardi appointment tomorrow, which is kind of a drag, but what do you do? When the meds obviously aren’t working anymore, you have to switch it up. I just honestly hope I don’t get a whole big load of different things to add to my already lengthy laundry list of pills. Did that even make any sense? Lol….sometimes when I type something I have to look twice at it, to make sure it sounded like it did in my head. ( It’s a wild, wild, world in there, I’m tellin’ ya’. ) I guess this ended up really kind of a totally random post, but point being, I made it to church. So there. ‘Nite everyone!