Tag Archives: lupus

Have Lupus? Speak Up!

We have an amazing opportunity through a Lupus Patient-Focused Drug Development (LPFDD) meeting happening on September 25.

The Lupus and Allied Diseases Association, Lupus Foundation of America and the Lupus Research Alliance​ are joining together to host this meeting which will be driven by people like you and me who have lupus, and also caregivers to individuals with lupus. The meeting will help inform the FDA about what it is like to live with lupus daily, and also what kind of treatments we would like to see in the future. 

Even if you don’t live in the area, you can attend the meeting online to participate. BUT even if you can’t attend, there is a survey for you to fill out. There you can tell your story, voice concerns and give your take on new treatments. This survey will help with the planning of the meeting and also to form a report to the FDA. They are trying to get as many people with lupus as they can to fill this survey out, so please fill it out and share this with your friends and family so they can pass it along.

We are being given a great opportunity to have our voices be heard by the FDA and I hope we blow them away with the response from our community! We need to make noise! There is a critical need for more research, new treatments and ultimately, a cure — and this is one way we can work towards this.

Please fill out the survey and if you are able, attend the meeting (whether in person or online). 

Participate here: https://lupuspfdd.org/participate/

6 Simple Ways to Cope with a Chronic Disease

If you’re dealing with a chronic disease (lupus or otherwise) there are so many things that are out of your control and it can be hard to find anything good.  If you’re dealing with an active flare, or just the normal every day aspects of disease, it can be hard to focus on anything else.  I have found that it is the simple things that keep me going… and happier.

  1. badesalz-1620261_1920Taking a hot soak in the tub with some epsom salts and/or essential oils.  The salt can help with body aches along with the hot water. It also will help to relieve muscle tension.  I throw the oils in just because I like it to smell good too. 🙂
  2. Drinking lots of water.  Seriously. I try to drink at least 80 oz of water a day.  I know it is good for my kidneys (which I try to keep as healthy as possible).  My brain feels clearer.  I feel less hungry (I eat when I’m stressed, bored or sad).  My body craves it! Plus, my skin always looks the best when I’m been drinking my water regularly. It is one GOOD thing I can do for my body no matter what else is going on.
  3. Watching funny videos on YouTube.  I know this is all stupidly simple stuff, but it works! As a mom I end up watching a lot of toddler cartoons and the news during the day, and maybe a show or two at night… but The Walking Dead isn’t exactly funny and gets my adrenaline going too much.  Watching some stupid videos on Youtube helps take my mind off things for awhile, and most of the time I find something funny and I can finally laugh a little bit.
  4. Going to bed early.  Sometimes you just have to.  My body tells me when I need it. By 6 or 7 pm I feel it. That exhaustion that only people with chronic disease can understand.  You don’t even want to eat or brush your teeth, you just want rest.  Let yourself go to bed early. Everything will still be there tomorrow, but you yourself will feel better and can face it all then.
  5. Look up an inspirational quote for how you’re feeling.  When I need some oomph because I am feeling physically or psychologically garbage-like I will do some Googling and find a quote that really speaks to me.  I try to share them with you all too, because from your emails I know a lot of you go through the same things.  I try my best to focus on that quote for the rest of the day.reading-1142801_1920
  6. Curl up in a comfy chair with a blanket and read a book with a cup of tea or coffee. Now, I haven’t had much time to do this lately, but this is absolutely one of my favorite things to do. No matter the time of year or what is going on, this is a surefire way to help me feel more at ease and help me cope with whatever is going on.

So. Very simple things. And this isn’t all of them, but just a few that are easy to accomplish in a day when you don’t feel like you can do much else.  Take care of yourself! Try to do at least one simple thing to bring a little joy and peace to your day.

What are some things YOU do to help yourself?  Please share!

A Day in My Life (With Twins)

I’ve wanted to write this post for awhile, but I knew that it would require some serious work!  So without further adieu. 🙂


I hear the boys over the monitor around 6:30. I am not a morning person. I struggle to get out of bed, throw my hair in a pony tail and snap this picture out the backdoor. The views of the sun rising from the back of our house are always beautiful. I almost smile, but it is too early. I feel like a zombie.

The boys’ room is downstairs so I go down there and heft them both in my arms (close to 50 lbs of toddler now!) and head back upstairs.

Breakfast time for the boys!


I struggle sometimes with getting them to eat, so I feed them what I know will get food in their tummies. Breakfast is normally some dry cereal to keep them happy while I get everything else ready (Kix today), half a banana each and some toaster waffles.  We have tried a ton of different things (eggs etc) and this seems to work, so eh, this is what we will stick with for now.  Which is how a lot of things seem to work in the land of Twindom.


Henry was unhappy, and required being picked up by Mommy. I don’t remember why now. This does happen multiple times a day.  See the big fat tear?

7:00 am – First diaper changes of the day.  I’ll spare you the details.


I turn on the morning news while the boys play.  The laundry I threw in the washer the night before goes in the dryer.



I watch as the boys play in ‘Their Drawer’ in the kitchen.  I have it filled with miscellaneous kitchen stuff they can’t hurt themselves with and I don’t mind finding strewn across the house.  They think they’re hot stuff because they can get into drawers.

7:15 finds the boys ‘helping me’ get food from the fridge to make eggs for Daddy and Mommy.


And helping cook. Thank goodness for knob covers.


The Lupie takes her meds.


Eggs are done! Delicious, but not too appetizing looking.


I gave up on drinking hot coffee in the morning because by the time I am able to finish it, it is cold. I feel if I start out with iced coffee, I don’t feel so sad when it is still cool 2 hours later. 🙂


It’s 7:35 and the boys watch some Barney so A and I can eat!


Breakfast is over for us, A is off to work. I make the bed. I find I always feel more organized and better about the day if I manage to get this accomplished.


It’s only 8:10 and someone else needs cuddles. I oblige. Sad faces.


Not pictured:

8:40 – Get the boys dressed! This normally involves me chasing them around a bit so I can catch them. Them wrangling them into clothes. Sometimes it resembles bathing a screeching, unhappy cat.

I sneak into the bathroom to put my contacts in (I can SEE!), brush my teeth and wash my face.  These 3 are essentials. Still no hairbrush used. Eh, oh well.

Time for a walk! Well a walk/run for Mama. 2 miles pushing these guys is truly a workout now! This was part of my cool down at the end. Sorry so shaky.

We’re back in the house and the boys are in their high chairs again, this time for a snack, at 9:30.  They act like I’m starving them and eat everything I put in front of them!  Fruit (which they will always eat) and half a breakfast bar each.


After their snack the boys play and Mama cleans. Yay.

Dishes before:


And after. The story of my life.


Then comes Diaper Change #2 at 10 am.

The boys play while I…


Fold the now dry laundry!


Made beds also make for good clothes folding surfaces!

I’m a super fast folder and by 10:10 I’m sitting down for the first time since breakfast to watch a little Olympics. I try to ignore the mess that is the living room.


It’s 10:30 and time to take the boys on their own walk!


Think Hudson is ready?

He threw a temper tantrum because he had to hold my hand. I thought the terribleness came at 2? Apparently not in our household.

We are back by 11 for the boys’ lunchtime.

Again, starving.


Lunch is pb&j. They will eat peanut butter or grilled cheese. God forbid I try to sneak some meat in there.  They get some blackberries which they gobble up and something else, but I can’t remember what now.

They get a 4 oz bottle of milk (I know, I know). 3rd diaper change of the day and then NAP TIME.

They go down without a fuss by noon.

Score 1 point for Mama for the day.

I scarf some leftovers.


I do almost everything during their nap time as fast as possible because you never know how long they will sleep. Hudson is a great napper and I can count on at least 2 hours from him. Henry? It could be 1 hour, 45 minutes, 2 hours? No matter what I’ve tried, I can never really rely on how long he will sleep.


Time to clean the kitchen again.  I wash the dishes and start the dishwasher. No after photo this time.

But there is a before photo of a dirty, sweaty me!


It’s 12:20 and I decide to take a quick bath. I throw in some epsom salts as I have been particularly achy lately. 🙁  Lupus sucks.


I’ve only ever half dropped my phone in the bath before. Don’t tell my husband.

And after! The boys were still sleeping at 12:45 so I did my hairs! Clean clothes! Everything! No makeup, but I don’t have anyone to impress today. 😉


I do a few things around the house, trying to be as quiet as possible. I check email on my laptop and putter around on the internet.


I find Henry sleeping with his butt up in the air all the time.

When they’re napping it is like I’m expecting them to wake up at any time.  I should have taken a nap because they slept for about 2 1/2 hours! Like I said, you just never know.

Again with the starving so they get another snack: raisins and Goldfish, their two favorites. (Not pictured)

Insert diaper change #4 here.

It’s 3:06 and I’m comforting another child.


Around 3:15 I decide it is time to get out of the house so we head to the grocery store! Just to Aldi, and I hate running to get their carts so far from the parking spots and leaving the boys in the van so instead we take the stroller and a huge 21 bag inside.


We hunt down mostly staples and head on out.

It’s too hot to be out.


At least in and out of the van that fast. It doesn’t seem to cool down the trip there or back.


I get help unloading.IMG_20160809_162234

I get the groceries put away and catch a breather around 4:30 and watch a little bit of Ellen while we all cool off and drink some ice water.


The boys play:


2,500 toys and the kid plays with an empty oats container?!?IMG_20160809_163551

Blue eyes.IMG_20160809_163557

Everything becomes a phone. I say, “Hello? Hello? Who is it?” at least 20 times a day.


It’s 5 pm and it’s been almost 3 hours so you know what it’s time for? Eating!

Chicken strips, potatoes, green beans and strawberries. Though Henry has decided to become a vegetarian and spits out any chicken I try to feed him. Hudson takes after me and eats all the things.

Anyone else have kids that love to throw their cups on the floor?

Dada shows up during dinner and so afterwards it is playtime!

You should see their faces light up when they see him.

Tonight is bath night. Hudson looooves baths and keeps saying, “Basth, basth!” all excitedly. Mama gets stuff ready and just before 6 they’re in the tub.


Henry was having fun dipping his face in the bubbles. We had fun laughing at his bubble facial hair.

By 10 after 6, the boys are out (by Henry’s choosing) and dressed in a fresh diaper (#5) and jammies.

I cuddle a crabby Hudson.  (Are we detecting the theme of the day here??)


Then they get their night night bottles.


Afterwards, another diaper change (#6, 12 diapers if you’re counting) and then we help them brush their teeth.

By 7 we take them downstairs and put them to bed. Hardly any peeps!

Laundry time again! This time washing.


I take a longish phone call, A works out, then starts dinner.

Laundry goes into the dryer by 8!


Then it’s time for Taco Tuesday (not intentionally).


Turkey tacos, that is.

We sit down to eat around 8:15 and start watching the newest to DVD Divergent movie.


We end up turning it off and watch the Olympics instead.  A is working. 🙁

I take a break from the tv and clean up some things in the garage.

Then I fold the laundry!


This time I put it all away.


Dishes for the last time today. Thank the Lord.


All cleaned up and ready for breakfast tomorrow!


It’s just before 10 and Mama takes her night meds.

I write this blog and then head to bed. 🙂

It’s not perfect, it’s not always pretty. But I love this life, and I wouldn’t change a thing.

And that’s my day! Hope you enjoyed this little glimpse into our world. 🙂




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Need to know exactly what lupus is? Go to: What is Lupus

I’m Putting on Purple today, are you?


I ran my third 5k of the year today. My objective was just to finish as I had a tough time at my last 5k. I finished, but it was tough!

I kept having to give myself pep talks as I went along. I tried to think of every mantra that would keep me going. I didn’t stop, I didn’t quit. I refused to not fight.

With lupus, we do this every day. Whether you feel strong or not, you are strong. Stronger than you know. Stronger than the average healthy human. You’re still here. You’re still fighting.

Lupus sucks. It makes for hard days. But we don’t stop. We keep going. We are going to keep going until they find a cure.

I didn’t stop today. No matter how slow I was, I kept going. I kept telling myself I was STRONG. I FIGHT.

Feel proud, you are a fighter.


5k for a Cure!


If you live in the southwestern Missouri area (or know someone who does) I hope you will join me this Saturday the 14th for Midwest Technical Institute’s 1st Annual P.O.P. for Lupus 5k Walk/Run in Springfield, Missouri.

Feel free to come and walk, or run with me and help raise awareness for lupus!!!

Check out the Facebook page: https://www.facebook.com/events/956642067718220/?ti=cl or sign up directly at https://runsignup.com/Race/MO/Springfield/MTIPOPforLupus5k. I hope I will see you there!!