Protecting Your Peace

I know it’s been a minute since I’ve written anything, forgive me. Life is getting the best of me! Ha!!!

But, this blog has really been on my heart for the past couple of days, and it’s about protecting your peace.

A popular page that I follow on twitter posted a question a few days ago asking, “What is something you’ve taught yourself?” and I responded with “Saying ‘no’ to protect my peace”. My mother use to always tell me growing up that I was a people pleaser. Although, a lot of my actions I did, I thought they were because I was doing it out of the kindness of my heart. Now that I'm grown, I’m starting to think, “Was I only doing things to please other people, and not myself?” I think we all sometime in our life subject ourselves to doing something for someone else, even when we didn’t want to, but because this was someone we cared about, it was hard to say no. But is that really people pleasing?

Since being diagnosed with lupus, saying NO is starting to become second nature to me now. Foolish me! I thought people I’ve done things for in the past would understand my position now when I say that I literally can’t do what I use to do. Side note: Ooooweeee, people will get mad if you tell them ‘no’, especially when you use to always say ‘yes’ to them. *ahem* Now, anywho…. But since now I am literally incapable of doing things I use to do, saying ‘no’ use to make me feel guilty. I felt like I was being unreliable or rude. Truth be told, sometimes I said ‘no’ just because I knew I had to protect my peace. Rather I was feeling sick or not, protecting my peace has become a priority to me now.

When I say protecting my peace, I mean avoiding things or situations that could possibly deter me from being productive. When I say productive I mean using my time to cultivate the dreams, goals, gifts, talents and abilities that I have to serve myself… in a positive way!!  This could mean, saying ‘no’ to attend a social gathering, or ‘no’ to helping someone out that you really care about. I’m learning that putting myself first is not selfish, it’s NEEDED.

Sometimes, I shut down. Don't log on social media, put on a playlist, grab a book and just kick my feet up, and enjoy me. It's funny because when my husband comes home, and if the house has music blasting through the windows before he pulls up, he already knows I'm in one of my moods. He'll kiss me on the cheek and let me be. When the music go off, he'll return with a "So, how was your day?" Ha!!! (That's why I love that man!)

I'm taking baby steps. I didn’t just jump in saying ‘no’ to any and everything, because it really is hard to do. It’s STILL very hard to do. I say ‘no’ and then turn around and second guess myself. Like, “Maybe I should go ahead and go to so and so, maybe it won’t be so bad!” or "Maybe I should do this for so and so, it won't take much of my time"… but every day is a learning experience and I’m determining which things and people I should say ‘no’ to. It's all a growth process. 

Because if you don’t protect your peace, then who will?

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!

Can Lupus Define My Purpose?

The dictionary defines the word purpose as “the reason for which something is done or created or for which something exists”.

As a person with a chronic illness, I struggle with what my purpose really is in life. Why am I here? And to do what? Every day when I wake up in pain, every time I receive bad news from the doctor, OR every time I have to limit myself, What the heck could my purpose be living like this?

I believe when a person is diagnosed with an chronic illness, they immediately try to think about “Okay, what did I do to deserve this?” and “Why me?” and that’s normal. We’re human. However, what we all have to remind ourselves is that we didn’t do anything to “deserve” what we are going through. Some way, and some how this illness is apart of our purpose.

I read somewhere that, “From the perspective of spiritual reality, illness is a step toward wholeness.” Let’s face it, whether you’re a lupus survivor, cancer, AIDS/HIV, Fibromyalgia, etc survivor, we didn’t consciously choose to go through this pain or deal with an incurable illness, however being diagnosed, the experience of dealing with these challenges can lead us on a journey that ultimately delivers great rewards. (This is me being optimistic, okay?!)

Living with a life-threatening disease forced me to completely reshuffle priorities and pursue new paths that have actually brought me profound fulfillment. Let me put it this way, Lupus gave me permission to make choices that I wouldn’t have considered otherwise. I know it sounds weird reading, lupus "gave me permission" but let me explain. For instance, I feel like I need to travel more, try new foods, create experiences that I would have never tried to pursue, all because I don’t want lupus to feel like it is winning. It changed my way of thinking, forcing me to make choices that would only make ME happy. 

I’m not saying my life is all “beautiful” and “lovely” because it gets hard. Every day, it gets harder. But I’ve got to get to a point in my life where I can accept this and make the best of it. Make the best of my life!

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!!

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