OHKAYYY! I’m back to-day to explain to everyone my FABULOUS weight loss program! Here you go. Step One: Contract Systemic Lupus Erethmetous :Deadly Auto Immune Disease. Have it ravage your heart. Be able to use only 30% of it. Get a blood clot . THEN HAVE SAID auto immune disease attack your ENTIRE nervous system , where it does whacka doodle things like , cause your heart do 155 while you’re asleep, or cause you to have absolutely no appetite, or your stomach to revolt at the very sight of food. Or it might even make your brain say “Hey let’s just shut the lights out while this chick is standing up!” So you can’t drive , you can’ eat, you can’t exercise, you can’t do anything. You catch EVERY single thing that comes by until suddenly one day you wake up realizing that something has gone horribly, awfully wrong. I go to the doctor , and I have a whole body infection, SEE that’s what’s YA gotta DO is get a WHOLE BODY infection . IT eats up all your extra body fat. and there ya go ! When all you can stomach is banana baby food, and jello, and sip water through a straw . 50 pounds in two months , so gone, so fast, you hardly even know. But you know that your body is changed. You know you’ve been weak and down in ways that you had never imagined and never planned. Funniest thing is , when I was taking 100 milligrams of prednisone and bloated up like a whale everyone talked about how ill I looked. But now that I am wasting with infection , and losing weight so fast , everyone thinks I look so great . It’s funny. Apperances with lupus are so so, deceiving. So lupus is so not a way to lose weight. SO NO , NOT A WAY I RECOMMEND people to use as a diet. So please This is NOT a diet I recommend ! LOL.
Why is it that parents don’t EVER REALLY tell you the “FUN” stuff that happens after you become a parent? They mention it in vague terms , such as “Just you wait.” or, if you happen to live in the South, “You are surely going to pay for your raisin’.” But never do they mention the specifics. Never do they mention that you shall be up for 20 hours nursing sick children while you yourself are so ill that your eyesight becomes so blurred there are two of everything,expecting lollypop toting munchkins to come singing from under the sink at any moment. Covered in several unmentionable substances, your hair in a scrunchy long lost it’s SCRUNCH. This was never mentioned anywhere in Dr.Spock or Dr. Sears, trust me, I’ve read them all. No where does it say anything about you wanting to sleep in the bathtub because it looks comfortable at 2 a.m. while one child is barfing into the sink, and the other is barfing into the toilet. ANNNNND, just when you think you’ve caught a break your husband comes home quivering like lime jello , (same consistency and color) , running a temp of 101.4 , saying a volcano is exploding out of my head, and oh by the way if I don’t make the bathroom now, there’ll be more of me on the floor for you to clean? NO ONE tells you these things at the altar, when you stand there all star spangled , breezing past the “in sickness and in health” line lah-de-dah …..My body now oozes down into the cracks of the sofa under the comforter waiting for the next wave of whatever the crap this is to hit , and as I pull the covers up over my head, I recite this mantra to myself , clicking my furry slippers together three times , “There’s no place like home, there’s no place like home…………….
Oh , I had forgotten how much fun it was to have sick kiddos when you are sick yourself. Remember when you were single, and you got sick, and you could just take your meds , and return to the glorious fluffy warmth of the bed that calls you from the bathroom after you’ve barfed your brains out? Remember how , when you DIDN’T have kids, and you just took THERA FLU , unplugged the phone, and shut off all the lights , that wonderful feeling of the darkness swallowing you up , and then waking up , about 14 hours later , thinking how fabulous it was to be nearly flu free? YEAH, ME either. I have kids . They have the flu. One of them is barfing all over the kitchen floor, while the other one is hollering at me, “Moooooom!!! Brother threw up on my favorite shoes!!” Did I mention I feel like crap too, cause I’m sick, after being up all night with said child, but I drag myself to clean up the vomit before the shihtzu gets to it, like a mid -morning snack. My head pounding like an AMTRAK ran over it in the night. My only wish , to be able to crash back down to the sofa, but now the other child is shrieking from the second bathroom, “MooooooM!!! I need clean underwear!!” ( Don’t EVEN ASK) Someone should be filming this I think to myself. They should film what I look like,(covered in barf!) what my house looks like,(Dogs run amok, and children hollering!) and DEFINITELY what this WHOLE experience is like,( my body aching, and head about to explode!) and show it to junior high students. It would be the world’s BEST form of birth control, let me tell you. Trust me, it would work.
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”.
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))) 🙂
Well, I had been on a roll with the blog posting, but did not make it here yesterday. I don’t even really have an excuse , other than I spent most of the day sleeping. I was totally exhausted and don’t even really know why. Okay, the kids have been sick, and the hubby was sick , too. So, I guess if I’m taking care of them AND trying to take care of myself, that might be why, lol. Luckily, it’s just spring allergies or sinus , I think, not doctor worthy, just extra mommy time worthy. But, hey, that’s life.
I do think it’s funny how both my kids react completely differently to sickness. My oldest son was born prematurely, and has had numerous health problems, and surgeries. He can be practically dying before he’ll say anything about feeling bad. If he tells you he needs to see the doctor , you had better be taking him seriously, because it’s BAD. My youngest son, however, can stub his toe, and be nearly bedridden. Drama king, for sure. It’s very difficult to take what he says and be empathetic because usually it is just majorly funny! Just imagine, a hand thrown onto a forehead in a dramatic manner …..”Aaaarrrgh! My toe! I’m going to die!” And the Academy Award goes to………Denim! At least he provides entertainment value, anyway.
Well, I suppose that’s all that’s new in my neck of the woods today, hope everyone else is well, and enjoying spring. Have a great one everybody!
Since the subjects on my blog lately have seemed to revolve around the medical industry, pharmaceutical industry, or healthcare, I decided that today would be a good day to dedicate the post to what friends and family, could, should, or in some cases shouldn’t do when a loved one is ill.
Now , before I start, please know this. I have been a chronically ill person for almost half my life. I ‘ve been in , out, around, up and down with the whole medical business. I also have a habit of saying things without thinking about it first. So, for this post please, please, please try not to be offended if I come across as rude, or unthinking. Believe it or not, I have some experience with this particular subject. Now, rocket science, or alternative music, I will leave to the experts on those particular subjects! Now, onward and upward!
Things That Are Nice~
1. Short , “Hope you are okay , phone calls”
I love to talk. But when I am sick, and tired, phone calls can be draining . I am glad that you thought of me! But having to do more than string two thoughts together can be exhausting , I’m sorry! 🙂
2. Asking “Could I do anything for you? If so, let me know.”
You don’t have to offer money , or flowers. You don’t even have to offer housecleaning. But it is nice to offer. One thing, though? Don’ t offer if you DON’T really plan on doing anything if I call on you.
3. Saying “I’m praying for you. ”
And leaving it at that.
Things THAT ARE NOT SO NICE~
1. Long , protracted phone calls.
I am sick. I just got out of the hospital. Please understand. I love you. I really do. But , my brain hurts.
2. Showing up unannounced.
See first answer.
3. Asking overly nosy questions as to what happened.
I have lupus. It is not going to go away. I will be tired. I will be sick. I probably even will be in and out of the hospital from now on. This is NOT being negative, just realistic. I know it is very hard for people to understand how I could be only 33 years old, and feel 93. They must think , “Well, geez. It couldn’t be THAT bad. ” Well. It is. So, deal with it. I am.
And I do want to add , less this makes me sound like an ogre, I have wonderful friends. I have fantastic family. I am blessed beyond imagining to even wake up every day. But, certain ones have asked, “How could I make your life, or journey with this pain easier?” . Well, these are some of the ways you could!
Think about the fact that if I seemed reluctant to have you come visit, that perhaps I have an embarrassing lupus rash. Or my house is dirty because I wasn’t able to get up. Or maybe I haven’t even felt like combing my hair yet today, and feel “ugly”.
Maybe if I seemed unkind on the phone, I had just taken some of my many meds and my mood is not what I would have wished.
Maybe if I didn’t remember to call you when I got admitted to the hospital, it was because I hurt so badly that my caregiver had their hands full with just getting the nurses to make sure I was getting pain relief, and phone calls were far from their mind.
I said all that to say this, “You weren’t unthought of!” “I love my friends and am so appreciative of them!” and remember that my only goal some days is to make it through to the next one. So, please if you felt slighted in any way by my actions, or lack thereof, it was nothing personal. I’m fighting for my life, here, for lack of a better way to put it. I hope this helps make it a little easier to understand. Thanks for listening!