"You're Just Fine...You Can Move Around When You Want To"

The "but you don't look sick" is NOT the most hateful/hurtful phrase you can say to someone with an invisible, chronic illness. It is "You could if you wanted to". The sad thing is, when the house is empty, no one but me, I can't do it if I wanted to. I drink very little because my balance is off and I am scared I will fall while alone. Or, it hurts too damn bad to get up to go to the bathroom so I don't drink a lot. I don't run laps when no one is looking at me! I sit in bed, propped up by pillows, hurting. Typically the least painful thing to do is lay on my side and watch something on my laptop. It is no way to live. Before my former boss ruptured my discs at least I *could* walk, and work...I was in pain because of lupus but I managed. Now, it is just me....unless my husband is off work. Apparently he can't relax if I keep interrupting him to talk about mindless things he isn't interested in. How much do you think I can find to talk about laying in bed day after day? Doesn't he think I get lonely? That I am talking because I need human companionship? I am NOT on vacation!!!! Mindless things..that knife cut very deep. Whenever I am slighted or sad, I think of my Dad being gone, and then it is compounded sadness...sadness x 100. I have never felt more alone in my life. It is one thing to fight the good fight while happy, it is another to fight it while miserable. It is like, what is the point? I do find comfort and refuge in my Bible. It is balm to my distressed soul. And my animals are my company. I suppose I will just talk to them all the time. They would care more about the subject matter, and be more attentive.

Let me try to end this on a positive note and find a happy picture or quote....

Found one! Abbie-Poo is my *CONSTANT* companion :) and, she HATES tears. She thinks it is her life's mission to lick EVERY one....and she doesn't have the freshest of breath....so, you stop crying :) I am lucky to have her.. Lucky to have a nice, soft bed to lay in while in pain. So what if I am isolated. I am warm, have the internet, and a full belly. I am quite lucky.

Is it worth the fight to live in pain?

Yes. It is one of *those* days. The pity party days. Although, in my defense I typically only have pity parties when others around me are...not as nice, sympathetic and understanding as they can be. When you live in pain 24/7, the smallest tiff seems like the straw that broke the camel's back. It makes you think, if life is miserable why do I fight so hard to hang on to it?

People, "normal" people, have NO idea what it is like to have to plan outfits according to which part of your body hurts. Or, to sit around miserable in dirty PJ's because all of yours are dirty, it hurts TOO MUCH to do the simple task of washing them, and you don't want to ask the ones who already do a lot to do one more thing for you.

Then, there is the fact that you are basically spending your life in bed. It hurts too much to hold a book or your nook, so you are watching something on your laptop all the time. You stay up until 6am because you hurt too much to sleep. So you waste your day. It feels like a wasted life.

I am fully aware that there are tons of people SO much worse off than I am, but I can't help how I feel about MY situation. Here is hoping for better days, MORE SPOONS, and filtered sunshine.

Spoons Will Be On Short Supply Today!

Abbie-Poo

Wilberforce Claybourne Humphries II

Let's see what I wrote on my arm as my to do list when I was in bed last night (when am I NOT in bed??)
-Vet
-Set up drying rack (more like beg Lee till he does it, I may try it. It will make me feel good to accomplish something, however small)
-Bug Lee to get car insurance quotes. Ours is up. I can hear him playing Star Wars, this may not be an easy task!
-Walk. The weather will be nice, but having 5 ruptured discs in addition to lupus makes this a monumental task!
-Wash dog(s) Not too bad with the yorkies, the big dog...sigh. I also need to groom them. Let's modify this....GROOM DOGS in preparation for washing tomorrow! It is finally warm enough. Grooming them is hard with my back.
-Shoes..since my boss injured me, I no longer wear my beloved heels. I have flats but they are expensive and not casual. I can only find one tennis shoe (the left) for 6 different pairs! The last time I really wore them I had a broken ankle and didn't use the right one! It will help my back to wear them, I think.
-Make gift for Mom and Lauren....at 4am I knew *exactly* what this was, I have a few things I need to mail them, but what was I going to MAKE them? (I do a lot of crafts but can't remember).
-Mail what I have anyway....
-Order shower gift for Hayley. I was forced to give her up by my parents just after I turned 17. We are now close, and she is having a baby. I have since found out her adoptive parents were terribly abusive :*(

Okay, fellow lupies....that's about 65 spoons worth. Oh, forgot two
-Make menu for two weeks to save money
-Grocery shop for said items

Rather ambitious for a girl who can rarely even get out of bed!

<<The photos are two of the doggies I need to groom>>

Distressed, Depressed, Disappointed

When someone with lupus is hurt (mentally) it can have a very negative impact on your health. I can only assume, like Fred Sanford said, that the big one is coming.

A blog is to get your feelings out, right? Well I was forced to put a child up for adoption by my parents. I didn't want to. She found me, and we are quite close now. Turns out, she was raised by monsters. They exist, they are real, and adopted my child. Hayley is now in her mid 20's and this year she was attacked by that cow of a mom. Physically, and it is on tape. The dad? He writes poetry. Not about trees and flowers and love, but about rape, incest, and sexual contact with very young little girls.

She asked me to come during her third trimester. I started saving. When I would be out, people would say, don't buy that you have to go to Texas. You get the idea. I got excited :) Finally after the year from hell, I had something to look forward to! I asked her today when she called the date of the c section so I could buy my ticket....<<<drumroll please>>> I can't go. Because those abusive, disgusting people are staying there with her instead.

After the physical altercation, she cut ties with those monsters. And, everyone around my grand daughter said the difference in her behavior was like night and day. These people will ruin her life, my grandson's life, like they did Hayley's. I can see it coming, so can everyone else, but we are all powerless to stop it. My grand may love this cow but kids don't know what is best for them! If she liked beer would you give her that? NO. And who knows what her dad will do to her as she grows. The poetry is disturbing. It isn't just erotic, it is violent, sexual, and involves children.

I have to go try and cook dinner. I can barely move. And now my heart is broken. I don't want to let my husband know I have been let down, again, so I suppose I will take something to calm my nerves and hide it and cry it out when he goes to work tomorrow.

You Don't Look Sick

People look at someone, and think they are making up an illness or at least exaggerating it because you LOOK fine. I was harassed by a cop for parking in the handicapped section and told "You don't look sick". When I listed all that was wrong with me, he said it should be a compliment. It isn't. Even my own family, who should understand the most, apparently doesn't think there is anything REALLY wrong with me. Nevermind that I had three heart attacks. Or multiple cat scans. Or MRI's. Or blood tests. 
What they don't know or see, is that it takes me sometimes an ENTIRE DAY to make myself presentable and be able to get up and move. A makeup application that takes a normal woman an hour can take me five hours. They don't see the before, which can be horrifying. They don't see all of the color correction, primer, concealer(s), foundation, etc. The multiple layers that it takes to transform someone who looks horrifying into the picture of health.
Lupus encompasses the entire body, not just one part. Can they look at me and see that every nerve ending is in horrible pain? That my body feels like the aches you get with the flu times 1000? That my heart is diseased, my kidneys? Self-reliance and independence seem to backfire. Pride backfires. If you can do that why can't you do this? Not knowing that I will be paying for doing "that" for two days. I feel like if I were in a wheelchair a good portion of the time I would get more respect. Now if I use it, they think "oh she is playing for sympathy" when in fact, I need one a good deal of the time and when you see me use one, I have finally given in.
When I worked, occasionally I would get special consideration because of my needs. It created a TON of resentment, even though 99% of the time I pushed myself to work harder (and I did) than most people in the room. But, since I was well put together, there really musn't be anything wrong with me. They didn't see me at the end of the shift, sitting in my car for two hours because it hurt too bad to get out and go in the house.
It is like on the show House. When they show inside someone and the disease or problem is exploding and the patient has no outward symptoms. 
Have compassion. It could be that someone makes an effort to look nice to make themselves feel better. Or that they are banishing the disease behind makeup because they can't stand to look at it. Or, that they don't want you to worry. But know this, the phrase "but you don't look sick" is an insult, and not a compliment.

A bit better today! I will take what I can get. Hopefully I will be able to make my hard working hubby some dinner tonight. It is FREEZING here in the mid south! Didn't realize it, woke up put the comforter on to wash and then realized it....and the comforter has to hang to dry. Oh well. At least I got *one* thing accomplished. May sound like such a small thing, but is a huge victory to me :)

First Post

I am going to try and get through this. It is hard to type. I am "under attack". EVERY SINGLE nerve ending is screaming. It is like the aches and pains of the flu, but 100 times worse. I would go get a shot if it weren't the weekend. I won't go to the ER, they can't find a vein on me anyway. So, here I sit. It feels like a life wasted because I can't do anything but lay here, so I sleep. And sleep. And sleep. My poor husband had a rough day, I am sure he wanted fed, but I can't even get up and heat up a can of something for him. He is *trying* to understand, but unless you live it, you can't.

Here's hoping for a better tomorrow! Love and spoons to all my fellow Lupies out there,

Juliekins