I'm still here!!

Hello my lovely followers! Sarah here. Sorry it has been so long since I have blogged but Lupus has been kicking my butt lately! I just don't feel as if this flare will ever let up! Exhaustion, migraines, kidney issues, pericarditis, asthma, rashes, hair falling out in clumps & PAIN everywhere & Always in PAIN. Then the death of my cousin, the stress of all that exacerbated the entire flare. 
I am just so very very tired. I feel as though I am just existing here. This is no life, just existing. I am so incredibly blessed by my Husband and beautiful girls that keep me going! On top of the sweet angels (friend's' kids I watch throughout the week) because no matter how bad I feel physically always having children around & the love of my husband puts it all into perspective.
The bad days when I hear from no one & get very bad reports from Dr's & can get no relief from pain are the rough days. I wonder how time can go on & on & my symptoms from Lupus get worse & no one I know or care about or 'care about me' could call, text,  Facebook, email or kik me. It can be a very lonely existence sometimes. I have become so good at faking a smile & saying I'm good when asked. When really, I'm just existing. This disease is so scary in the sense that you don't know what to expect from day to day. Yesterday could have been a great day where toomorrow I may not be able to get out of bed. It is frustratingly infuriating sometimes!
The one thing I can say is my Dr has gotten a handle on my insomnia issues which helps A LOT! It is unfortunately more medicine but getting a good solid 7-ish hours of sleep at night is so nice!
It just scares me some days knowing so many people whom have died due to complications of Lupus, friends through various support groups that I have gotten close to. And there are family members & loved ones I don't talk to. We are not promised tomorrow folks. Life is way to precious of a gift to hold grudges or just take for granted that that person will always be there. You just never know. Hug those you have next to you whom you care about closely, tell those you love that you love them. You may never get the chance again.
Now on to loving on my loves & getting night time snuggles! My favorite part of the day! <3
I will make sure to not let so much time go by before I blog again....promise!
~~Sarah

"There's no such thing

....Of a good day to give hope. Any day you give hope, is a great day!"


Hello my fellow Lupies.
Today I have so much in my mind to share but I will just share a couple of the things that come to mind.
I am very blessed to be able to represent our Lupus communities where I live. I am active on our Lupus group of Colorado Springs as well as other fundraisers and such and it is such a joy to be able to do this.

My words of encouragement for you today is, not to let Lupus take your Joy away, you can do something for another fellow Lupus Brother or Sister that need it. 
May it be a letter, a visit to see how they are doing, or it could be join your local lupus community to help others with your story, you never know how much that person sitting next to you, need to see that someone like them has made it thus far. To know for themselves that if you could, so can they. It only takes a little bit of courage and an open heart. 
With an open heart, and a spoon dust Sprinkler, you can reach as many lives battling Lupus and give them hope!  

Go out there, be hope, speak hope, give hope!

Love and lots of Spoons to all.

Jen

Better than all the spoons in the world

Emma's smiles and laughter make everything better! She's better than all the spoons in the world! {look up the spoon theory} so blessed to have such a wonderful child who for two years old is already wise beyond her years. I've never seen a 2 year old worry the way she does, and it sometimes breaks my heart. 

She knows what to do when I'm having a seizure. She can sense when I'm having a bad day and on those days she tends to want to have a Caillou marathon on Netflix in bed with me :)

On one bad day she went to my cousins house so I could get some rest. I was told Emma moped around and finally asked my cousin "is my mommy ok?" When she came home she kept asking if i was ok. A two year old should not have to worry about their parent! I try to be as brave and strong for her as I can be! She's my entire world! 

Shawn & I are so blessed to have this amazing child!!!! I could brag about our daughter all day! Mommy and daddy love you chickadee!

Strong in the face of my flares

I don't hide my illness. I share it so others know they're not alone in their fight and to raise awareness! I'm not ashamed of my illness, it's a part of me and something I have to live with for the rest of my life, but it does not define me!

When I'm in a flare I most likely will have the butterfly rash for a week or more. The rash itself can be very painful, but sometimes I don't notice it. Along with my rash I'm in major pain. My arthritis is unbearable and somedays I can't even get out of bed. I'm lucky that lupus hasn't progressed to more than my skin, joints, and my seizures. I'm lucky to not have it effect my internal organs. I fear for the day that happens, but I will continue to fight and kick this disease in the ass!

{A butterfly rash is a rash that takes the shape of a butterfly. Known more formally as a ‘malar rash’, a butterfly rash is most commonly associated with the autoimmune disease lupus, though it can also be present in other conditions and particularly other autoimmune conditions.}

-- Missie