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!!

Prednisone, why you do me so bad?

Um, did I just eat that entire turkey from Thanksgiving?... Oh wait? And did I just steal the rolls and cranberry sauce from my aunt's plate? Ohhhhh snap! Where did that three layer strawberry cake go? Don't tell me I ate all of that too?!?

*sigh*

Okay. So I'm fat.

Not only was I already a greedy person but on top of that, the medication I take makes me devour food like I've been starving for weeks. Sadly, the fat goes to my face and neck which makes me look like the Michelin man from the chest up!! 

Ohhhh, and not only am I fat with a face as big as a moon pie, I have the weirdest mood swings!! 

I was looking at television (not sure what the show was) but I was laughing and tripping and the next thing I knew, I got seriously depressed. I mean, it came out of no where. You would've thought I just got news my dog had died!!!! (I don't have a dog by the way...)

Anyways, so what is prednisone? Prednisone is a corticosteroid and is used to treat inflammation and help suppress the immune system. 

(corticosteroid: (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) prescription drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.)    

*source: Lupus Foundation of America website

And that's all great and dandy but check out these side effects of taking the drug:

Common Side Effects of Corticosteriods:

• Weight gain
• Thinning of hair and skin
• Bruising
• Stomach discomfort
• Mood swings
• Increased risk of developing diabetes
• Increased risk of infection
• Increased risk of cataracts
• Joint damage
• Osteoporosis (bone thinning)

So can you imagine someone having to experience each of these symptoms and try to fit into society living as a normal human being?!! It's tough!!! On top of that, us lupies don't have many medical treatment options to choose from so we usually work with what we have and try to press on day by day. If you know someone that has lupus, encourage them to keep on going! Pray for and with them and acknowledge their struggle by being a great support system! :)

*smells food*

Okay, I've gotta go!

It’s the “Fog” In Me.

Do any of you experience fog brain? Fog brain is described as feelings of mental confusion or lack of mental clarity. I know this isn't recognized as a health condition or listed as some diagnosis, but as a person that use to be on top of my game in everything, and now suffer from those feelings.... I’m here to tell you, that FOG BRAIN IS REAL.

Like most of us lupus patients, we go through those situations where people say things to us because they really don’t understand what we are going through. I had someone argue with me the other day and ended with the statement.. “Nae, oh my gosh, are you that slow that you don’t get it?” Now did that hurt my feelings? Um yes! Because before I started all these meds (that I truly think is of the devil) I literally could remember and process information quickly… BUT NOW… OHHHH NO!! I can’t barely function or remember important information without my planner or my phone being with me.

People laugh at me because they think when they are telling me something, and I have to repeat it to them (or can barely repeat it to them), they assume it’s because I wasn't listening, when in reality, I heard everything they said, my process of understanding what they said is what I’m having the problem with. As a person that hates sympathy I laugh it off myself. Who wants to be labeled as “the person that just don’t get it!”.

It’s even more difficult at my place of work. I work in the non-profit sector with various roles and responsibilities, and I’m relied on for so much stuff. Do you think I’m going to keep running up to my boss and say “Wait, I don’t get it” and end up losing my job?  Who’s going to pay my bills then? Definitely not this government who don’t even recognize lupus as a disability (smh, let me not get on that subject). But it’s weird how most of us lupus patients stay positive and strong when we deal with all of our symptoms, and we have definitely learned how to hide our pain and confusion very well! Yay for us! *sarcasm*

Okay, let me end this blog while I can still comprehend how to log off (*wink*)

Let Me Explain...

"Can I catch it?"
"How do you get it?"
"Is it like having cancer?"

Us lupies have the hardest time explaining what Lupus really is, and most of the time when we explain it, people are still often left confused. The weirdest thing about Lupus is that most of the time, a person that has it does not look sick. We often get that, "Oh, you just need some rest!", or "Maybe you should try exercising and a healthier diet" I know that I'm smiling and laughing with you right now, but guess what? Twenty minutes from now, I may want to drop kick you down a flight of stairs and go home and rest like nothing ever happened. (Blame the prednisone!!)

(side note: If one more person that think that they're a doctor and try to diagnose me with what THEY think I should be doing, I'm going to scream!!!!)

And although I don't mind answering questions for those that don't get it, I find it quite redundant and frustrated at times.... ONLY because after I explain it, people want to be doctors and tell me that I've been mis-diagnosed. LIKE REALLY???? I understand that this is a disease that is not as popular as the others but please don't down play my hurt and pain because you don't understand what I've actually been diagnosed with. 

Yes the symptoms of lupus are similar to other illnesses and diseases, but it's beyond anything that a flu, cold, or the "lack of sleep" could do to a person's body. People, do your research on lupus and if you have questions after that, please don't hesitate to ask us lupies!! If anything we are all for spreading awareness about the disease so that more research and funding will go into finding a cure for the mysterious disease.

Be a little more sensitive people and don't try to play doctor. Just love us in our pain and understand that we appreciate your patience with us. We REALLY do!!!

 

Flare Up... Up.. And Away!!!

Am I the only one who catches a flare up at the worst times?! Ugggh! Like, lupus is the most inconvenient disease ever!!! Geeeeez!

Alright people...for those of you that don't have a clue what a flare up could do to a person's body.. let me explain...

This picture to the right is the "educated medical term" of what a flare up could do to a person's body if you were to search for it on Google.

Let me be real with you guys about a flare up... there is no one specific symptom to this disease...a flare up is just one.. and it could cause a person's entire body to shift and shut completely down. I'm talking about, seeing a person that is perfectly fine at 10:00am and by 10:15am, they are laid across the floor in pain and a complete sweat because they can't stand up or walk.

I try so hard to hide the fact that I have lupus. I literally push myself everyday and try not to let symptoms determine my attitude that I have towards people. But by the end of the day, I'm so tired of pushing myself to be perfectly fine, I'm drained. I push on through because I have to work and support myself, and I'm definitely one of those people that hate having people feel sorry for her, so YES, I pretend everything is good. I believe that 90% of us lupus patients do this daily.

I have people tell me.. "Well at least you should have it easy because you're single with no kids". Now that might be true, but let's be honest... there isn't ONE lupus patient that has it "easier" than another lupus patient. Not many people understand what we deal with from when we wake up till we go to sleep, so having a different lifestyle from another lupus patient does not make having this disease any "easier" to deal with. Sometimes you just have to shake your head at people, give them a hug any ways, and tell them to have a great day!

Oh my goodness, the questions we get from people that don't know or understand.. *sigh* a mess... I think I have my next blog in mind.