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?

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!!!

 

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! ;)