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.

I'm not lazy, I PROMISE!

One thing that sucks the most about lupus is the fact that when you wake up in the morning, you have NO idea what your body is going to tell you you're capable of doing.

Prime example... SOOOOOOO, I woke up this morning, looked over at my packed suitcase (because I had planned on going on a trip when I got off work)... lo and behold my body told me to stay at home this weekend.  My energy just disappeared over night. 

Y'all, I was hyped about leaving and hanging with my friends but like I said, my body said no! 

I went to work like normal, but the entire time I couldn't be totally productive because I was out of it. I tried to smile and push through today but I swear, I could've laid on the couch all day, with a box of ice cream sandwiches, and a cold glass of milk and would've been okay. 

This is what my life has come to... I am so much more than just laying on a couch. That's not me! I love being out and about and always doing something, but lupus has definitely revamped my whole life.

and let's not talk about my horrible days at work.... O-EM-GEE!!!! I know sometimes my boss looks at me and wonders... "Is she really "sick" or is this chick just lazy?"... Sigh. And lets be for real!! How can I prove that I'm really not lazy!! It's true!!! It's true!!! I really am sick and I really do love to work.

Hmmmm, I don't know!! This is just a random rant from a person that just downed a handful of meds. They don't call us spoonies for nothing!!! :)

Who got time to worry?

Having lupus has really changed my entire way of thinking. I swear I use to stress and worry about the most littlest things, and now I swear I brush stuff off my shoulders like it’s nothing….

I use to always say, “Everything happens for a reason.” When I was first diagnosed, I use to think.. “What the hell is the reason for this?” but every day I see more clearly what the reason is…  it’s to enjoy my life while I still have one.

I was depressed my first month when I found out I had a disease that could take my life away, and when I realized that I had to keep living because laying around wasn’t going to get me where I wanted to go… I got up with a whole new attitude.

I wake up in pain almost every day, but I WAKE UP. I spend money on medications every month, but I HAVE A JOB THAT ALLOWS ME TO AFFORD THEM. Simple things like this is what many of us take for granted when there are so many other people that wish they could have half of what we have. I’ve learn to never focus on the negative of a situation, but to keep on smiling and pushing through the pain and suffering that many of us experience.

Before, I use to worry about the stupidest stuff.. “Why am I so fat?”.. “Why can’t I make straight A’s?”.. “How can I fit in?”.. blah blah blah. Who cares about that mess now??! I’ve got bigger fish to fry and worrying about those little things are not top priority to me anymore. This disease has allowed me to mature my whole state of being.. I take care of ME first. My mind, body, and spirit.

And that whole saying, “You either get with it or get lost!” has become my motto because it’s so true. All of my fellow lupies know that it’s no time to worry about things or people that aren’t with you for the long run….life is too short, and we’ve got to enjoy every bit of it while we can!

I Have Lupus...

"God often allows us to be in situations that are too much for us so we will learn no situation is too much for Him."
- Erwin Lutzer

I can honestly remember the day I got diagnosed with Lupus (which I'll tell more about in another blog) and when the doctor came into my room and told me what I had, I was clueless to what lupus was and how I had got it. I can remember calling my mom and grandmother telling them the reason why I was aching and hurting so much for the past couple of weeks and although they didn't react too bad to the news it made them anxious for me to move back home.

See the thing is, I live out of town, with no family...A hand full of friends (which I must admit have been a awesome support system since I've gotten diagnosed) so receiving the news alone took a toll out on me.

I cried my first night after hearing the news. I had logged in on the Internet & started researching the disease and I just couldn't understand why God had placed this "plague" or "disease" on me after I had tried so hard in life to be a strong and good person.

Then that quote mentioned above was in one of my daily devotions that I read before bed every night and since then I have found myself reading that quote every morning when I wake up.

See, I thought receiving the news of Lupus was a punishment from God. I honestly thought that it was a disease that was going to kill me...

Nooooooo buddy!!!!!!!!!!!!

I am stronger than ever and I think being diagnosed has taught me that nothing can ever bring you down unless you allow it.... I have found strength in God and in myself to continue my doctorate degree, work a full time job, allow time for volunteering and community service and I still hope to one day have my own business...

So this quotes means a lot to me because it just further expresses how I have lupus, and lupus does not have me..

xoxo

The Awkward Pill Container

I was reading one of my lupie friend’s blog on how she has now reached taking 62 pills a day. As sad as this is, it’s a sad truth that a lot of us lupies deal with. We go to the doctor, PRAYING that the doctor will lower our dosage, but sadly another pill gets added to the bunch. I must say I am blessed though. I have not reach 62 pills a day, but it’s scary to even think that so much medicine MUST get consumed in order for me to have a normal day. Taking pills has become an everyday deal for us, so we deal with it right!?!

One thing I’ve started to hate as a spoonie is… that awkward moment when you pull out your pill container.. (mine looks like this..)

Anyways, the room gets so quiet when I pull this out and start to sort through my medicine. All eyes are on me, and it’s like I want to scream.. “Umm, yes, I’m okay, please continue conversing amongst yourselves!” I try not to pull it out in public, because that’s when all the questions are asked....

1) “Do you really have to take all of those pills? Every day?”

2) “What does each of them do?”

3) “I can’t imagine taking all of those pills every day, how do you do it?”

Now, I’m all for educating those that have no idea what lupus is and what us lupies have to do to live a normal life, but to ask me the same question, EVERY TIME you see me pull out my pill container is a little too much. 

1) Yes, I take these everyday (that’s why my container has Sunday through Saturday on it)…. (duh!)

2)Each pill does what it needs to do so I won’t feel pain, curse you out because I’m tired, and most importantly they give me a sense of functioning like a normal healthy adult… 

3) and how do I do it? Well refer back to answer number two… It’s not that I want to do it, I have to!!

So I give this advice to those that see someone pull out that awkward pill container….. don’t give them a sympathy face, and don’t stare at them like you’re uncomfortable watching them, because believe it or not it’s more uncomfortable for us to have to do this every day… just be understanding and get ready to pass us spoonies a glass of water and keep it moving… 

Okay?? ....Understood?? .... Good!!

Now…. I must go take my meds... *pulls out pill container* Good night folks! ;)

But, you don't look sick...

All of my lupies know the saying, "But you don't even look sick..".. we've heard it a thousand times, and truthfully (speaking on behalf of the millions of us that fight this disease) We're sick of it...

Tell me something people, what does "being sick" look like..

Like this?


Or maybe, it's like this?


Either way? You're wrong.

Just because I'm not walking around with tissues, sneezing and coughing, does not mean I am not sick! People who tell me that are so ignorant to the fact that there is more than one kind of illness that makes you sick.

I can remember one time when I was at work, and I started flaring up at my desk.
I walked into my boss office.. and this is how the conversation went:

Me: Mr.Boss (I will leave his name anonymous) I'm not feeling too well, I really do need to go home.
Boss: Why what's wrong?
Me: I'm feeling really sick.

He then proceeds to stand up, and feel my head for a fever. I gave him one of those "TRICK PLEASE" looks and backed up... (you are not about to put your ole' smelly hands on my forehead.. what's wrong with you?!?!)

Boss: Sharnae, you don't even look sick, is this a woman problem?

*pause* Did this fool just ask me was it a "woman's" problem?!?!

As disgusted as I was with that comment, I just walked out the office and just dealt with it. That was when I first experienced my "You don't look sick" moment... and knew from then on I was going to face that problem with ANYBODY I told I was sick to.

One thing people got to understand about us lupies is that this disease does so much to our bodies, that even if it sounds bogus.... trust and believe that it's a huge possibly that whatever we're telling you, and explaining to you how we feel.... IT'S TRUE!!!! (Guess what?!?! We don't make this stuff up for attention!) This disease attacks ANY healthy organ in our body, and I'm sorry but until you have experienced your own body ATTACKING itself, you have nothing to say to me about "looking" sick....

*peace & blessings*

So You Think I'm Lying?!

The worst thing about having lupus is dealing with other people. Any lupie can understand why that is. Honestly, there are some days I wish I could just lock myself up in my apartment just so I don't have to deal with people.  

Lupus really is a disease that no one understands.

I go into work, attempting to live a normal life, and I sometimes find myself just wanting to sit at my desk and not do anything. From the outside looking in, it looks as though I'm lazy, I hate my job, I wish I wasn't there, and it's so not true. I actually love my job, and I hate my outer appearance seems that way, but it's really something I can't help. Lupus makes me tired. It makes me want to sleep and be anti-social. I don't go out as much as I'd like to being afraid that I'd have a flare up and freak everyone out. Medications have taken a huge toll on my body. I am so young, but this disease ages my body TEN TIMES faster than time has. 

Before lupus, I had the most energetic personality  (and I still have that) but I do have my days. I'll call in sick, and people don't understand why, thinking I'm just playing hookie... "So you think I'm lying?"... Trust me, I'd rather be at work, than at home dealing with this disease. People under estimate the actually pain a lupie or spoonie goes through. 

I feel bad for those that have friends and family that don't understand them. Most of us lupies are in this alone, that's why I cherish my lupie fam so much. Honestly, I have a few people in my life that really do understand me and pray for my healing, and I'm so thankful for them!