Don't Say This To A Chronically Ill Person

For those of you that know someone with lupus (or any chronic illness for that matter) all we ask is that you don’t say the following things:

1. “You’re always so late!”

The thing with having a chronic illness is that we are ALWAYS tired. Even if we sleep for 8 hours, we STILL wake up tired. Mind you, our body is constantly fighting to heal itself, and in the midst of all of that, we lack energy. We also move a lot slower than most people. I know when I’m getting ready it takes me about an additional 45 minutes to get ready than my husband. (I usually try to start getting ready before him so we can finish about the same time!) Any ways, we’re late because we are struggling to get there. We want to support you, be there for you, and attend outings, but our bodies won’t allow that sometimes. Please understand we are trying to be supportive and show our faces, just don’t be mad if we show up a little late… we really took every piece of energy we had to show up!

2. “Maybe you should exercise more.”

OMG!!!!!! If I hear this one more time!!!! So, truthfully... I am a person who believes that with a healthy lifestyle, you can feel better! HOWEVER.. don’t assume that I’m not trying to make better choices with my health. Let’s not forget about those with chronic illness that are unable to move around and exercise because it’s already so painful to just simply walk a couple of feet away. Stop trying to be my personal trainer!! Believe me, all of us chronically ill people WISH we could get up and move around more.

3. “You were just looking fine a couple of hours ago!”

And that’s the crazy thing about a chronic illness, you can feel fine just a couple of hours ago (and just to put this out there, we aren’t really fine… what you saw a couple hours ago was us faking and trying to keep it together) when we’re looking at our worst, it’s because it is to the point to where we literally CAN NOT fake it anymore. We are fighting this disease 365/24/7 and most of the time we are pushing ourselves just to live a normal life. Especially those of us that are married or have a family. Society doesn’t care that we are ill. Bills still have to be paid, family still have to be taken care of. There’s no sympathy for us. We push extra hard to seem normal and strong because we HAVE TO!!

4. “Do you need me to do something?”

This one is kind of tricky because it depends on the person, but If anyone else is like me, it’s very hard to ask someone to help me or give me something. Do us a favor and just do it. (haha!) For example, If you see that I’m stuck in bed and unable to cook, you can bring me a turkey sandwich from Subway!!!! I’m married, so my husband takes care of me a lot but for the chronically ill patients that you know are fighting this disease alone. Be kind and feel free to offer your help EVEN if they don’t ask for it. We greatly appreciate it, seriously!

5. “My friend has *insert another illness here* maybe you should try what she’s doing, it’s similar to what you’re going through.”

DO NOT!! I repeat, DO NOT compare my illness to someone else’s. No two persons are the same when it comes to a chronic illness. Someone you know may have cancer…. BUT cancer IS NOT LUPUS. Now that I think about it, honestly, two different patients that both have lupus aren’t even the same. This disease is so very complex and hard to understand. There are medical professionals that don’t even understand what we go through. So please, please don’t compare us to someone else’s struggle. We get that you want to help us, but don’t try to be our doctor, just be our friend.

6. “I never hear from you anymore!”

It’s because I’m sick and tired of being sick and tired. (Ha!) Every day is a struggle. It really is. We are mentally and physically drained… and some days we have to take time to ourselves and just get it together. We’re fighting every day to not give up and when you aren’t hearing from us, it’s ABSOLUTLEY NO offense to you… we’re just trying to balance all of what we are going through and sometimes that takes isolation. Send us a text message, shoot an email, leave a voicemail, write me a note and leave it at my door, it doesn’t matter!!!! Just don’t lose touch with us. We need you now more than ever!!!!

I hope this blog has helped those that don’t understand, get it just a little.

And although the list goes on, these are some of the main ones I encounter on a weekly basis. What about you all? Leave your thoughts in the comment section below.

Working Chronically...

Not too long ago, I posted on twitter that Lupus patients are all super heroes. I said that because we are able to do things that “normal” healthy people do all while fighting a disease that is trying to keep us down.  One of those things are… working!!

There is a large percentage of people with chronic illness that is unable to work. My heart goes to those people because believe it or not, there is nothing a chronically ill person wants more than to be able to take care of themselves. Make their own money, have a sense of independence. Since being diagnosed, I have had my fair share of days being off work due to my illness. I’ve had to take breaks in between and because of that I sometimes feel like I could’ve been further along than I currently am. Don’t get me wrong, I am blessed to be able to hold down a full-time job (as of now), but majority of my lupus family isn’t so lucky.  What MOST people may mistake for lazy, really have no clue what a chronically ill person is going through.

Chronically ill workers may have problems in meeting job demands, they may experience physical, cognitive or sensory limitations, have fatigue or pain complaints or other disease symptoms. Psychological distress, depressive feelings, feelings of shame or guilt, lack of coping or communicative skills, and non-supportive colleagues and supervisors may add to work-related problems. It’s hard!!! But, I’m doing it. I feel a sense of pride when I actually make it through a full 8 hour work day, 40 hour week schedule without having to call in or crashing at the end of the week.

Here's a few tips that I use to make it through the work week:

1. Decorate your workspace with positive affirmations and pictures of people and things that motivate you.
2. Make your feelings aware to your co-workers & manager. You may have to sit with them and explain exactly what lupus is. Print out literature to share with your team about your disease if you need to.
3. Prioritize sleep. Make it number one. I usually try to give myself 7 hours or more of sleep. (That sometimes don’t happen, but hey.. I try!!)
4. Keep energizing snacks at your desk.
5. After you clock out, BE FINISHED!!! Leave work at work and when you’re off take that time to rejuvenate your mind and body.
6. Know when to step away and take a break. Go to the bathroom, step outside for a second.
7. Don’t be afraid to ask for accommodations. Most companies (and a lot by law) are willing to help you succeed in your position and if that means you need a stool for your swelling feet, back support for your lower back, a certain keyboard for your computer because you have joint issues… then ASK!!!!!

Now of course, everyone’s situation Is different. Some of us work in environments that aren’t so accommodating and work with people who are just flat out cruel. For those of you that do work in situations like that, I strongly encourage you to find another job. Work somewhere where you are appreciated and won’t have to feel guilty for having a chronic illness that YOU didn’t ask for any ways. Because let’s be honest, if something was to happen to you today, your company would go about their day and have your position posted on the HR board the following day. 

You’re the important factor here… put yourself first!

*For my chronically ill people who are unable to work… Don’t feel any less of a person because of a disease that has disabled you. During my times when I was unemployed I found other things that made me happy to confiscate for the loss of my job (whether it was reading, volunteering somewhere, advocating lupus online, etc.) I strongly encourage you all to do the same and to remain positive because you’re still the important factor here, and I’m rooting for you!

Am I Easy To Love?

We all know that being in a relationship is hard work. Both parties have to put in the work, to make it work. Not only are you learning to love someone else, but you’re also learning to love the baggage that come with them. In my case, my baggage is lupus. With lupus comes depression, insecurities, fatigue, doubtfulness, a sense of loneliness, and feeling like you’re unable to be loved. (That’s a lot to deal with right?)

So, my question to my husband is… With all this baggage I have.... Am I Easy to Love?

One thing that is the most difficult when you’re chronically ill and married is still having to cater to someone else besides yourself ALL WHILE dealing with the negative impact of your chronic illness. You have to fulfill your partner’s needs (both physically and mentally), be able to take care of your home & children, making sure that you are available to them when they need you to be. (And don’t add the extra responsibilities such as school, work, etc. on top of that)  All of this…. It’s very difficult to maintain it all because every day I’m already busy trying to fight for my life.

Sometimes, I feel like I’d be better off by myself, not subject my husband to the stuff that I go through. Because it’s a lot. It takes a toll out on me and him, and it just seems like my illness holds us both back from so much. We are both still young, I feel like newlyweds are supposed to be traveling, experiencing new things, taking random dates to exotic places, going on double dates with friends, planning a family, etc.  NOT always in a hospital room, or doctor’s office being worried that my test results are going to come back good or bad… NO WAY! That’s not newlywed life!!!! Our lives are not normal.

Every day it’s something, and each day we struggle through it and sadly, in the midst of all of this, the relationship takes some trying times because eventually, something has got to give. Someone is going to become mentally or physically tired. It’s draining. To always deal with the fact that tomorrow,  I may be unable to fulfill my partner’s needs. That tomorrow, I may not be able to go to work and earn the income we need. That tomorrow I may not even want him to touch me because I may be flaring up. That tomorrow, I may not be the Sharnae he married and fell in love with.

Every human being wants love (you’ll be lying if you say you didn’t) and I have that with my husband, I really love him. But am I easy to love back? I just don’t know.

Friends, How Many of Us Have Them?

When you're chronically ill, relationships are often tested. Especially with your friends.

The saddest thing that a chronically ill person could experience is losing friends over something that is completely out of their control.

Since being diagnosed, I have lost my share of friendships, mostly because I have become this "unreliable", "sick" friend that no one wants to "bother". Truthfully, I have been absent for a lot of special events, dates, or ceremonies, and it's not because I don't want to be there. It's just physically, I can't make it.

Eventually, your friends get tired of asking you to come places when they know it's a huge possibility that you probably can't make it anyways so eventually, the invitations either slow down or they stop altogether.

I have been blessed enough to have some friends that send me text messages inviting me out ALL the time or even dropping by my house to just check on me every now and then, but in the midst of my illness, I've noticed that people I thought were down for me, aren't. (and that's okay, it hurts but... it's all apart of life, right?)

Me, hubby, & friends going to see Black Panther

It's quite heartbreaking to lose people you've known for years, who you've grown up with and have literally shared everything with, all because your illness keeps you from getting out being who you use to be. I think a lot of the time, people assume I'm"changing" and let me just put it out there, when you have a chronic illness... guess what??

I HAVE CHANGED!! Everything about me has changed. My way of thinking, being, acting, EVERYTHING!!!

I fight for my life every day so things that used to matter, can't matter as much anymore because every day I have to persevere the energy I have just so I can make it. So excuse me if I can't make it to some of your events, or if I have to cancel at the last minute, or I'm not always available when you try to hang with me. Believe me, this is not the life I wanted. It's not the life that any chronically ill person wants.

But my friends though, my real friends, who have literally never judged me, always make themselves available for me (whether it's a ride to chemo, or holding my hand after surgery or a biopsy, or dropping off food when I'm sick) I appreciate ya'll! No words, or no actions can truly describe how much having a support system really means.

So when it comes to friends, I definitely have them... and they mean the world to me.

The Good People in the World...

With everything that's going on in the world, believe it or not, there are still some good people in the world.

So, my husband and I went out on a date, BUT before we went out, I had a flare-up. Feeling guilty that I haven't been able to go out on a date with my husband for a while, I pushed on through my flare up and decided to go out for dinner.

So, we get to the restaurant, sadly all the handicap spots were taking so we ended up parking far from the building. I'm walking with my cane, huffing, and puffing, barely making it. I finally get to the door and the waiting room is PACKED! Nowhere to sit. So, I stood there for a while and finally, a young lady offers a sit next to her because she notices me leaning over barely standing.

I thank her.

We have a brief convo.... and then....

Host: Sanders party of 2!!!!!!

(So here's where the good in people happened)

I ended up getting stuck in the chair I was sitting in. Like my legs literally gave out. Not only that, but my right arm has gone completely numb from walking with a cane so hard. My husband is trying to hold our coats, and my purse aka my suitcase AND help get me out the chair all at the same time, mind you.... I am NOT skinny or lightweight. (bless his heart!)

So the lady that offered the seat next to her and another complete stranger ends up helping me out the chair. I'm not talking about a slight lift, they HELPED ME OUT THE CHAIR and fixed my clothes on the way up. Helping pull down my shirt cause I'm pretty sure I was flashing the innocent. 😡

Now, I know it doesn't seem like much, but being disabled in America is NOT EASY. We lack so much support from not only the government, but some of us face neglect from our jobs, family, and friends, so the fact that two complete strangers went out of there way to assist me, it meant a lot.

I couldn't thank them enough, and I probably thanked them more than they wanted, but I just appreciate people that can help people like myself because I know if I was able-bodied, I would do the exact same thing.

Feeling Beautiful..

Let's face it.

One of the hardest things for us lupies to do is get out of bed.
Let alone, fall asleep.

But when we finally get out the bed, we have to get dressed.

It takes every bit of my energy to brush my teeth, wash my face, shower, and do something remotely neat to my hair. After I've done all the basics, everything else just seems irrelevant. So, with that being said, it's very hard to feel beautiful when you have no energy to put into do all the work to make you look beautiful.

I have lost the confidence of feeling beautiful. I use to go to the nail shop every two weeks, maintain my weight (even just a little), I wasn't a make-up wearing girl, but I'd at least throw on some mascara. All of the things that I use to do to make me feel beautiful I just don't have the energy to do anymore.

Now some things are out of my control, for instance... I've lost hair with my chemotherapy and since I've been diagnosed, I've been on a pill called "prednisone". In a few blogs back, I discussed how hungry that pill makes me... now with hunger comes fat... then with fat comes not being able to fit in your regular clothes... THEN with not being able to fit in your regular clothes comes feeling fat and helpless. YUP! That's the stage I'm at now... FAT & HOPELESS.

Truthfully, I tried the diets that they have out there for lupus patients. I've completely given up red meats and pork, and I try not to eat after 7pm. My weakness is snacking. Throughout the day I snack on fattening things (*sigh* I need to do better) and I never exercise (*sigh* I so need to do better) it's just I put all my energy into going to work and when I get off work I am dead beat tired.  (Shout out to all us lupies that are getting up going to work! It's HARD!)

I also suffer from the butterfly rash that likes to show up during the worst times. And let's face it, we live in a society were you are completely judged on how you look. Can you imagine showing up for a job interview or going anywhere with this on your face..

I'm looking in the mirror every day noticing the change that my body is going through and it's the ugliest thing to see. I swear, I try to avoid all mirrors at all cost. I try to tell myself, "Girl, you are wearing that dress!", or "Girl, you're smokin' hot in that outfit!"..., it's really hard to have that confidence when in reality I know what I use to look and feel like before I was diagnosed.

What's a girl to do?

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?

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! ;)