Random Lupie Vent

Let me forewarn you... I am randomly venting.

I find myself wanting to lay in bed, be anti-social, and read books that I've probably read over a million times. It could be the increase of prednisone (who am I kidding, that is what it is!) but I am ALWAYS conflicted with my sleep schedule.

I'm always wanting to lay in bed, BUT while I'm there, I am wishing I was up doing something. (Sounds weird I know!) But that's just how crazy my medicine have me. I'll climb in bed at 9pm (hoping for a good sound sleep) and 2 or 3 hours later, I'm staring at the ceiling or watching Golden Girls wondering why I hadn't fallen asleep!! I'm thinking to myself... "I could've SWORN a hour ago I was exhausted!!!"... MIND YOU, I have to get up for work in the morning, and  the result is usually me being sluggish ALL DAY because I didn't get to sleep till 1am in the morning.

AND LET ME NOT GET ON THIS WEIGHT GAIN... Sooooo, I've never been the type to watch my weight, I figured "Hey, I like french fries, pasta, and bread... I don't think loosing weight will be an option for me right now!".... HOWEVER, since I have been diagnosed with lupus, I have tried different ways to possibly reduce inflammation in my body, and although its not 1,000 percent effective, I do feel good about myself trying to heal my own body naturally.... SOOOOO from eliminating some of the foods I use to eat, weight kind of just "fell" off...

Soooooooo, with that being said... I have probably gained over 20 pounds pilling up steroids in my body in the past few weeks. NOW I'M PISSED! All this time I was eating my bread and pasta, I maintained weight... NOW I get a dose of medicine to help me and then the weight comes!!! OMG! How backwards is all of this!! I'd rather the weight came from my french fries and burgers (since I knew it was my fault from eating all of that!) INSTEAD it's totally against my own control... *speaking off... I'm hungry for some shrimp and pasta right now*

Ohh... Ohh... Ohh...

and let's not talk about all the blood that doctor's have to take when you go to an appointment! *rolls eyes* Like, couldn't you get ONE TUBE, and share it among all the different test you have to run! I truly doubt if they are using ALL 9 tubes of blood to run maybe 3 or 4 test. Like, are you guys secretly selling my blood for a profit or something. (Probably so!) and then STOP BRINGING in these INTERNS that have no clue on what they are doing! I swear, if I meet another nurse that does not know how to get the vein the first time, I'M GOING TO SCREAM!!! Stop playing around with my arm, and bring a professional in here before I throw my $2 old navy flip flop at you! *smile*

I'm done. *sigh*

Love and Lupus

I admire any man or woman that's willing to be in a relationship with someone that has lupus. Not only are us lupies in and out of doctors appointments and hospitals, but we take medicines that makes us an emotional wreck and in some cases interfere with our physical appearance that can conflict with our confidence.

Not many people are built to be that support system that we need and love us regardless of what we may feel like, or look like, and I can't judge them or blame them. Some days we don't want to go out on dates, we'd rather stay home.... Some days we don't want to talk, we just want to lay in bed.. Some days we don't want to move, we just want you to sit with us. It's different being in a relationship with a lupus patient because we need stability in our relationships that consist of a caring and understanding attitude that's willing to put up with our emotional mood swings and the fade of our beauty at times.

A few of the meds that I take have literally made my hair fall out, I've gain weight, and weirdly enough, they cause me to cry at random times throughout the day. (Who would have thought huh?) Another thing lupus patients worry about is having a family with someone that they have fallen in love with. I'm going to be honest, I'm totally freaked out about having children because of lupus. I'm scared that I could become ill and something happens, and I'm scared that I'll be unable to handle the stress of being a mother. Now a days, if you date someone, you're more than likely dating someone that wants to settle down and have a family and build a life together?

I've seen many lupus patients have successful relationships, and go on to get married and have kids (huge kudos to those people loving us lupies) and I've grown to accept what I can and can't do in a relationship, however, I sometimes feel guilty being with someone putting them through what I have to go through! Can any one relate?

Are you my doctor!?

So, I've recently moved back home to live closer to my support system and I must say, it's definitely a challenge. I have lived on my own since 2004 and moving back into the house were I grew up made me feel as though I was taking steps backwards in my life. People tell me, "Nae, you have lupus, you couldn't help that you ended up in the hospital." .. Yeah, yeah... That's very true, but it's so hard being home because now everyone wants to diagnose me and tell me what I need to do and how I should do it to get better.

Okay people without lupus... If you don't listen to anything I tell you, listen to this: PLEASE DO NOT TELL A PERSON WITH LUPUS WHAT THEY SHOULD DO TO GET BETTER!!!!

Save yourself the breath and save us the time from listening!!! You telling us what you think would work only stresses us out and makes us want to throw rocks at you till you fall unconscious!!! Like seriously, don't you think we have already researched every possible thing we could do that could help us stop this everyday pain we experience. Welp, if you don't know... NOW YOU KNOW!!!! 

 

Okay, let me calm down. *whew* I'm sorry.... I flashed back to how some people can be such idiots!! *ahem*.......

Now....Us lupies do understand that some of you come from a place of concern, and we appreciate that, but PLEASE believe that we don't want to be sick, and I am sure that we have ALREADY tried any and everything out there to our best ability to heal ourselves. What we need people for now is support! We understand that this is a disease that you may not understand and all you want to do is help (because who wants to see someone they love and care about in a constant pain) but don't act like we aren't trying to feel better, we are fighting every waking moment to get some kind of relief for ourselves. 

Try sending a inspirational text, or calling to check up on us... Believe me, it does us wonders!! Just the fact that we cross your mind and you want to know the update on us gives us exactly what we need. I'm not sure how other lupies are and I can only speak for myself with this but the best thing someone can do for me is tell me that they are praying for me. Since I genuinely believe in the healing power of prayer, you are honestly giving me comfort by praying for me and everyone else that has this disease. 

So please do me and us other lupie warriors a favor.... BE OUR FRIEND, NOT OUR DOCTOR!!