LUPUS IS KICKING MY [email protected]@

Sometimes Lupus Is Stronger Than I Am

Recently we added two rooms to my parents home(where I grew up and am buying) and my grandson and I moved in with my mom. Three weeks ago I started painting the ceiling in my room. I had been feeling better than usual for a few days, so I thought now or never! Planning ahead with Lupus or any other chronic illness, well you really can’t because it can land you in bed at any given moment. Out of the blue bam, you’re done. So when you have good days you squeeze in as much as you can.

Two or three years ago this would have been a quick and easy process since the room is 12′-16′ not huge by any means.  I am quite sure I could have knocked it out in a couple of hours (or less). Eight hours plus is what it took! EIGHT HOURS ugh. Lupus has affected everything I do, in every aspect of my life.

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Reality kicks in at these moments and screams at me, you aren’t who you were a year ago. Slow down take your time and don’t be so hard on yourself. I can’t just go, go, go like I’m used to doing. Coming from working in a retail environment and accustomed to a fast-paced always moving lifestyle to one of barely making it out of bed is a hard pill to swallow. Sometimes the Lupus wins and I just have to give in and let my body rest.


A Hard Pill To Swallow

Painting my ceiling landed me in bed for three entire days. I felt like I had a severe case of the flu!!! As bad as that sounds I think it could have been much worse.

I have found a combination of over the counter medications, essential oils and pain relieving creams that actually help a lot when used together. My heating pad, ibuprofen, and Dramamine have become my best friends.

Essential oils are amazing! Eucalyptus is refreshing and invigorating and actually gives me a burst of energy, so I use it quite often. Trust me I was a doubter but decided to give in and try out the essential oils everyone talks about.

I love that you can use them in so many different ways too!! In the diffuser, in the bath or as a rub. The bath or my diffuser are my favorite ways to use them, these seem to help me the most.

Now For Those Walls

Two weeks after the ceiling I decided to tackle painting my walls. How did that go?? Two walls were painted about a week ago and I still haven’t fully bounced back, but as soon as I do the other two will get done.

After the walls flooring is next. Something tells me I may need to ask for help with that process! Especially since this is something I have never done or even helped anyone do. Thankfully I have a 14(almost 15) year old grandson to help with the tough stuff. He is such a blessing!! Very talented and athletic, I see big things in his future. (I may or may not be a bit biased)

It Doesn’t Always Win

I definitely have some good days and try to make the best of them. The good days are when I try to get all the hard stuff done. (Unless I’m taking care of my grandparents)That’s an entire story in itself. Grandpa is in home hospice care and grandma is in stage 4 kidney failure, so there is a lot going on there.

As I said previously he is very athletic, soccer, basketball, track, and baseball. I do my best to attend as many games as possible. He depends on me and well I’m his biggest fan so I need to be there. Dizziness, however, does get in the way of that occasionally all other symptoms I can fight through to be there.

The reason I fight through some of the harder days is for him and the rest of my family of course. However, he is the one I have still with me so he completely depends on me and I don’t want to let him down. He has enough emotional stuff to deal with and doesn’t need more added to it.

What I’m Learning

Lupus is brutal! For those of you who don’t have it and like me before I became ill knew nothing about it, just imagine your body literally attacking itself. It’s painful, it’s exhausting, it’s a daily battle and some days Lupus is going to win and you have to learn to be OK with that or you will go insane. It’s depressing, maddening and makes me frustrated and irritable.

People have different reactions when they find out a person has Lupus or at least my experience. I have heard are you going to die? Oh, that’s nothing serious why aren’t you working every day or I’m sorry, I hear that’s really hard to diagnose and treat. Or my very favorite which I mentioned in previous posts really?? because you don’t look sick. I don’t hear that one anymore because unfortunately I have aged a lot, gained a lot of weight and have serious bags and dark circles around my eyes.

Patience, I’m learning patience. I have to be patient with my body because it just doesn’t function like it used to. I have to be patient with those around me who just don’t get it.

Cherish every moment. I have had to slow my life down and it’s made me aware of the little things that so many of us take for granted. Every single second of life matters, so take the time to really experience the moment. Learn from it grow from it. Make sure the ones who are important in your life know they matter. Take the time to actually stop listen and observe. I believe this is also something we all lose sight of in this fast-paced crazy life.

Sometimes Lupus Wins But Keep Living Anyway

Lupus kicks my ass on a daily basis in one way or another, but I refuse to let it win. Every time I get knocked down I will get back up. (even if it does take three days)

My family will always be a top priority. My relationship with Christ will remain number one. Eventually, my Pinterest business will become a full-time income or I will find a job my body can handle but I will not give up.

This is just the beginning of my Lupus journey, and I’m sure I will have more updates. I’m looking into some natural and holistic treatments and will let you know the results!! You can read my previous posts on Lupus :




Have a Blessed Day, Myla