Lupus is not something I write in depth about often.
I keep it quiet. I don't even share with my family. I push through because I want to seek the normalcy of life and not let the discouragement that comes with chronic pain overcome the beauty that God has given us. I want to conquer it.
However, having lupus means that different parts of your body are affected at any given time. It may be neurological one day and joints the next day. Along with lupus I have sjogren's syndrome and chronic migraines.
I have had burning mouth syndrome since Jack's birth 4 years ago. My mouth and lips are on fire ALL. DAY. LONG.
There is no relief.
My team of doctors are not sure if it is neurological since I have peripheral nueropathy. In simple terms, my nerves go haywire in all parts of body and cause extreme pain.
It could be hormonal.
It could be due to one of the dozen (+) meds I take.
So 4 years later my mouth is still on fire. I want to cry. I want something....ANYTHING...to make the pain go away.
As we continue to try and fail to treat it, I ask for your prayers.
Please pray for the doctors to be more aggressive in options. Pray for me to stay positive. Pray for me to have more patience with my sweet boys.
When your body betrays you daily, it can be a struggle to have the energy to parent the way you desire.
Pray for me to communicate my struggle better to Kevin. My heart is heavy for him and how he takes on this baggage too.
Thank you my friends. Thank you for letting this be a place where I can let it all out and not be strong. Thank you for praying.
I love you dearly.
Much love,
Katie
Linking up with Casey.
45 comments:
katie,
i know we haven't been blogging buddies for very long, but i want you to know that i care. and more importantly, listen and pray :) you have my prayers and i wish you peace and relief and the utmost healing. illness is so complicated, hard to voice, and can be a huge weight on one's shoulders... know that you can be honest, and that we hear you and care about you!
i am so sorry that you have been having pain (of all sorts) lately. i pray for you sweet sister... i surely, surely will!
much love,
maggie
<3 <3 <3
hug to you katie
Praying for you, friend!
I found your blog through Casey, and I want you to know I'm praying for you! You are one brave woman.
Said a a pray for you friend!!!! <3
Praying for you sweet friend! There's an older lady at our church who has lupus and I think about you everytime I see her.
Wow - you are such a strong and brave soul. I always say, "Moms can't take sick days" and to deal with that kind of pain everyday AND be a mom sounds beyond overwhelming. I'll pray for the Lord Jesus to heal your mouth completely. Amen.
I'm so sorry to hear about your struggle Katie. You are so strong and I know that you are doing and will continue to do amazing things throughout your life. Your husband and boys are so blessed to have you. I will keep you and your family in my prayers.
Things will get better.
Katie thank you for sharing this about yourself. I had no idea you have lupus. Syd's speech therapist is recently married and next month will have her eggs taken out and frozen so that she may someday hopefully have kids because she starts a round of chemo to help treat her lupus. All month long in December she was in and out of the ER because of terrible joint pains in her hands. I feel for her, and you because it is such a rollercoaster of a illness it seems. My experience is limited (a college room mate and my BIL who has been mildly affected by lupus), but through Syd's speech therapist I have learned a lot about how unpredictable it can be. I am so sorry you are struggling right now and I pray for you, your boys and your husband. Lots and lots of love for you.
awwww sweet friend! Every time I start to feel down or allow the fear of non-healing settle in my ... husband reminds me that Isaiah 53:5 says that by his stripes we ARE healed...not will be healed in the near future but ARE. Praying for the wisdom of the Dr. you are working with, a peace for your self in the decisions you find, and for your family. praying for relief for you.
Praying for you at this moment, for relief, for healing, and for strength. You are an amazing woman!! Hope things get better soon.
Praying for you Katie!
praying for you friend....more than you know! xoxo
Katie,
Thank you for posting this. I found your blog through Casey and have since been pouring through your story and your posts. I am amazed at your faith in God's goodness and encouraged by you so so much.
Pumped to be following along in your journey through this space =)
Thank you so much for sharing this and for allowing me into your world. I am sorry you have to go through this. But from the little time we've been bloggy friends, I can tell you, I know you are doing the best you can and I know you are a GREAT mother. You will be in my prayers.
surely praying for you...
hey there, praying for lots of grace and relief. You have my admiration for sure. blessings on you today
In the short time I have been blogging, it truly amazes me how supportive the online community truly is. I feel like by following your blog, I too have become a small (very far away) part of your family. You and your family will certainly be in my thoughts.
oh katie, i'm so sorry you're going through this. i honestly don't know how you do it.. but please know that I will be praying for you.. for patience, peace and for strength. we do care about you so much and are so happy that you can share your burden with us. sending you BIG (virtual) hugs friend <3
Katie,
lifting you up now...
xoxo!
a big hug from across blogland, and a promise to pray. i'm praying right now!
<3 <3 <3
praying for you! found you through the link up!
Praying for you this morning! You are one amazing mommy!
Oh, Katie...I am praying for you right this very minute and will continue to pray that relief is sweet and soon.
oh girl. i'm praying for you. that sounds so horrible. thinking of you today <3
thanks for opening up and sharing a piece of your daily struggles ... i will be praying for you!
praying for 'relief' from the pain & for you to feel God's loving touch strongly this day.
love you sweet friend!
Those daily private struggles are the most isolating, but rest assured God is always good and He will be with you in your darkest hours and is always listening to your prayers. My prayers are with you too. I can't imagine how that must be :(
Wow. Somehow your strength - and maybe even your moment of vulnerability - is a light to me tonight. I guess that's probably not the right thing to say, but if you can get through and triumph, then my battle seems trivial. Sending you a hug, and a prayer.
I'm sorry you are hurting right now Katie.
I can't imagine. Praying for you. Praying for better days, and for patience on the bad ones. Hang in there. xo
I am praying for your complete and miraculous healing! That the drs will be in awe and there will be no where to point but to Him. I know he heals. He healed me of PCOS. I was never supposed to have kids!
I pray that you find some rest and peace for now. I've put you on the prayer list at my church.
Love you, blog buddy!
katie i will be praying my heart out for you. my m-i-l, has lupus and my s-i-l has sjogren's syndrom (also an autoimmune disease) their struggles are so heart breaking to witness,
i pray for wisdom in treating these diseases and finding a cure.
i pray for comfort, peace and understanding for you and your family.
my heart is with you katie.
love you!
praying for you, friend! and so very sorry you have to experience this. remember: "His strength is made perfect through our weakness..."
Katie, this post brought tears to my eyes.
For your strength and bravery and for the heart you have and the kind of wife and mom you want to be and the battle that you face in order to achieve that.
Every day.
I think back to some of my very dark days and how hard it was for me to give to my family.
My pain was heart pain, but still so hard to be a mama when all I wanted to do was curl up in bed.
I can't imagine feeling that way all the time.
Especially when it is a physical pain, which then causes mental and emotional pain, and you have 3 busy boys to chase after.
You amaze me.
I know it is God in you.
May He give you even more strenght and grace.
You will be in my prayers, friend.
Love from,
Greta
Oh Katie,
I'm so glad I stopped in today to read.
I had no idea you have been in so much pain. For so long.
I will pray for you. I am not the greatest of "prayer's" I will warn you...but for you, I will.
Thinking of you sweet friend. And wishing you lived closer.
i'm so sorry for your struggles... i deal with some chronic health issues, as well, and know how challenging it can make life. but i love your blog; excited to be a new follower!!
anna
www.embracethesunshine.blogspot.com
Katie, my prayers are with you as I walk along side you through this journey of uncertainty. You are so busy taking care of everybody else and not enough time on you. Remember, you have to come first! Hard concept, I know. I am sending strong prayers for you right now and so is my family. We love you!
I found your blog through Flor at Life in Progress. I take Plaquenil 4x a day for what has been ruled out as Lupus but not identified as anything specific yet. Mine is so minor compared to what you go through, of that I am sure, but I understand your post whole-heartedly and send you prayers.
xoxo,
Ashley
I love you Katie girl and will pray too. I think of you so.many.times. in with what you must go through with being sick. But you are always so positive. I am so glad we have this network and can ask for prayer with this beautiful group of ladies. Love you & praying.
Oh gracious, I think we have much in common, first of all my husbands name is Kevin. LOL
thank you for being so vulnerable and for sharing this post. if you have time, check out my Enduring tab on my blog...
I don't talk about it under Enduring, but I have Sjogrens, which is similar to Lupas, but I jsut wanted to encourage you ...so I hope you will read that..
And you are so right, we push through, even though our bodies fail us, it's so so hard when others don't understand, and we just can't do the simplest things. i feel less of a mother and a wife.
it can rob us of so much yet perspective is everything. i am so sorry you are in pain.
i don't talk about it much either, i don't want my blog to be aabout that...but i think it's important to share from time to time, so thank you for that honesty and realness.
xoxo
Oh Katie! You are so brave!!! And inspiring. I will pray for you to find some relief and peace.
You poor thing. I can't even imagine the daily struggles.
Hang in there Sister.
BIG HUGS!!!!!!
Brooke
katie. i am weeping over this. your pain is my pain, because you are my friend. so sorry i haven't been by here sooner! praying and praying for you!
i love you.
You are so brave & have so much strength & courage. I can't imagine being in chronic pain, you are amazing......praying for you!!!!!!
You inspire me Katie in so many ways. I will pray for your lips specifically and be honored for the privilege to do so. So glad you shared!
Gonna prayer for you. I don't know what chronic pain is like, but I know when I have deep pain for whatever reason I think of people in chronic pain. And think "Imagine this. All the time. Brutal."
Praying for respite from your pain. Answers from the doctors. And for you to hear the voice of God clearly and specifically because that always brings some awesome peace.
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