So sorry I haven't been blogging! My flare ended for like one day and that one day we spent it with my inlaws. Note to spoonies everywhere: trampolines are the enemy! I had a good time. Only had one thing that bugged me and that was a family member saying I'm to young to know what pain is......... Oook. I just pushed that into the back of my head and didn't think about it the rest of the time we were there because I wanted my first day out of the house to be drama free. I chased my daughter, Emma (2), and my two little sister-in-laws, Lylah (2) & Kyleigh (6) pretty much the entire time. 

{think my makeup did a good job covering up my butterfly rash}

Ever since that day (last Sunday) I've been stuck in bed. My butterfly rash flared up more and I threw out my back. Nothing has helped the back pain :(. 

Emma is talking a lot more which is amazing! Love her to bits! Except she keeps calling me Missie. She calls me mommy too, but it aggravates me when she calls me Missie. I realized this was a phase because when I was at my inlaws my 2 year old sister in law called me mommy the entire day. Emma finally got over her fear of swings that day too! 

And today while my cousin had Emma my cousin called to tell me she beat her fear of the swimming pool (a kiddie pool anyway). I'll have a picture of that later. 

As of right now I'm in a TON of pain. Back is killing me still, my joint pain seems to never go away, and now I'm all itchy. I've been itchy ever since I took a tick off of Emma's ankle. Ugh hate ticks. It was her first one ever and definitely won't be her last. 

Love and spoons to you all and I hope you're all doing ok!

- Missie  

Awareness bling

I ordered Emma and I matching mother/ daughter lupus awareness bracelets from www.foxxycharms.bigcartel.com! They're to lovely not to share! I love them! 

- Missie

Pain

The definition of pain is: physical suffering or discomfort caused by illness or injury.

I had NO concept of pain until I became chronically ill. I had my wisdom teeth pulled at 15, had several root canals & a laporoscopic surgery to remove a large ovarian cyst at age 17. Even then, that was nothing compared to what I endure on a daily basis. I put on my best "fake smile" & make it through the day. But pain so severe, so deep it feels like someone is stabbing me with a hot iron in my bones on top of severe muscle spasms. Severe migraines 2-3 times a week. Labor, csections, yeah that sucked. But at one point, the pain from that ended. This level of unending pain on a near daily basis is enough to break a person. This is not even a day that I have had seizures, this is every day pain. I'm hot but cannot bear to sit under the ceiling fan without a blanket because the cool air causes my muscles to spasm & ache worse. My oldest daughter is so very affectionate & constantly touching & rubbing my arms, it almost brings me to tears because it hurts so badly on those bad days and even though I never tell her to stop, as a Mom it breaks my heart that my child showing affection causes me pain. Imagine that as a Mother, your child touching you physically HURTS.
Now, I don't know why some days are worse than others. And yes, I will be honest there are days I cry out to God that I can't take it anymore. But, I do. I press on, I move forward. I don't complain much to others, except to my husband and my Mother in law when she's around because they don't judge me for it. Today is just a very very bad day pain wise. I will make it through this day, and I will make it through the next bad days. I will be stronger for it.
Pain, I never really understood the definition until I became chronically ill. Be careful how you treat someone, you never know what they're battling on the inside. Because even if I saw you today & you asked how I was, I would smile & say "great!"

Understanding

A friend posted this on Instagram & I loved it! I get bashed, blocked, ignored & talked badly about for "complaining" all the time on social media. It bothers me because the people who tell me I "complain" too much used to be good friends & family. Instead of taking it for what it is, me needing an outlet to
Vent, asking others for encouragement & prayer, they took it as complaining & said it bothered them. I once had someone say "how could anybody be upset with anyone crying out for prayer or help!? Shame on them!"
I appreciate those who understand ME & don't bash me for using social media as an outlet. You couldn't possibly know what it means to have someone smile & be encouraging on the bad days, or how their rude ignorrance can make a bad day worse.
So, be kind do EVERYONE you have NO idea what someone is hiding behind that fake smile! YOU could be what changes someone's day, it's up to you! Let's be encouraging & understanding of others & each other!
~~Sarah

Rough week

Sorry I haven't blogged much this week. My week went from good to badly in a flare over night. I still don't feel well. My more prevalent symptoms right now are EXTREME fatigue, seizures, being numb & tingly on my right side, migraines, nausea, dizziness and extreme all over body aches.
I got pretty discouraged with it all this week. This is no life I'm living! I wouldn't give up being chronically ill, because it's who I am & I feel it helps me to have compassion for others. But more than a few good days here & there would be so nice! I feel so sorry for my kids & husband when I'm flaring like this, not much of a life for them either :(
Just wanted to say "Hey" to everyone & hope your week is going better than mine!~~Sarah

Instantly

A funny thought that made me smile:

Get out of the tub. 

Put on sexy blur nightgown. 

Then add white compression knee high socks. 

Then add gray compression gloves. 

Nightgown instantly unsexy. 

Lol I look ridiculous! Oh the life of a Lupie. 

- Missie 

Still Here

Sorry I haven't blogged in a while! This flare has been kicking my butt! I've lost 3 pounds because I've lost my appetite, I can't cry because my eyes are so dry, seriously fatigued partnered with annoying insomnia, seizures, painful joint pain, butterfly rash, etc etc etc!

My butterfly rash and eye swelling didn't get as bad as it usually does so that's a plus! The dry eyes drove me mad though!

 I usually take a warm hot bath at night for my achy joints and during this flare I needed to do so, so badly! But as my luck would have it, our hot water heater broke!! (they're supposed to fix it tomorrow morning) As Sears took my grandma's money ($200) to come out and install the new one (we already have it, it's sitting outside my house, just need to install the freaking thing!) they told her they'd be out here first thing Saturday morning to install it. Well my grandma called on Friday to see what time exactly they'd be here and they woman said "Oh we don't work on Saturdays, but for another $100 we can come out on Saturday." We were all SOOO pissed! Needless to say tomorrow after it's fixed there's going to be a line at my house to use the shower.

I have no idea how I would of gotten through this flare without help. I was stuck in bed pretty much 90% of the time, and my cousin took care of my 2 year old. Made me feel blessed really. When we eventually move out we'll probably be 30 minutes away from my family, but I know my inlaws will love being around Emma more so I'll still have the help. I can not wait until I start seeing the doctor in July so I can start taking medicine for my Lupus. Just taking 2 aleeve every day is NOT helping my pain (thanks to my other quack of a doctor).

This flare is still kicking my butt, but not as much. I was able to get out the house for a short period yesterday and for a couple hours today! I walked a lot and ended up having two seizures around 7pm. I was in the sun a lot so I'll probably end up regretting that though :( my arms are already itching like crazy.

Love & Spoons,

Missie