Being Thankful...all the time

So ...lots of people are putting their daily "thankful's" on FaceBook during the month of November. While I think this is the PERFECT time to do this (I mean, it is Thanksgiving season) I hate the fact that we, as a society, leave it to only one month.  What would happen if we were speaking out our "thankful's" each and every day? 

This year has been a great one for our crew. And maybe that's because we've come out the other side  from all of 2012's struggles and heartaches. We've seen where we've been while navigating this path of our lives, and in that we have learned to appreciate the little things a little bit more.  I'm not saying I don't get down, become selfish, want for more... But in the broad scope of life, we've got things pretty darn good here. 

We've got our health, our loved ones, our friends, our Faith.  

Since last year and all my health issues with lupus, we have been going, going, going. Some people (who mean well) have said "You need to slow down."  "You are doing too much."  And my least favorite: "You are going to make yourself sick...again".  For those who have said it (or maybe even thought it) it's okay. I know you have no idea what it means to have a chronic illness. To be sick at random times, for random lengths of time, with random, alternating, confusing symptoms. There's no way you could possibly understand that after laying in the bed for six straight weeks twice in one year, watching life go on without participating in it; why I would ever think of slowing down, staying still, taking it easy.

 You see, Lupus has taught me a lot about myself. It has taught me a lot about pushing through difficult times. It has taught me a lot about having faith when I have absolutely zero control over my illness. It took me along time to not feel guilty about being sick. I didn't cause lupus. Nothing I'm doing or not doing will cause my illness to flare.  Yes, I can take care of myself, eat right, exercise and be the healthiest I can be on what I can control, but there is so much I can't control about lupus. So in the midst of the struggle, I try to count my blessings. I try to be grateful. Everyday. There's not a day that goes by when I'm not fully aware of this "thorn in my side". I may look healthy, smile through the pain and pretend like my body is not fighting itself, but the truth is...it is. And for that I'm thankful. For everything this disease has taught our family.  For everything I've learned while traveling this road... about myself, my marriage, my children.  

So you may not see my daily thankful posts, but I'm trying to be thankful (even in the hard stuff) everyday. And I challenge you to do the same. Carry your gratefulness not just through November but all the way through 2014. I promise it'll open your eyes to so much more and the big things will turn into the little things. Before you know it, the little things will just disappear. :)

You are chosen.

Okay, let's go ahead and get the white elephant out of the room. Yes...it's been over a year since I posted anything about our little world. Truth is...life's been busy. We've had ups and we've had downs. 

I'll try to do better. Honestly I will. No promises though cause that just adds one more thing to my to-do list. 😁

YOU ARE CHOSEN

So I'm at the ReCreate women's conference last night and Priscilla Shirer is speaking. Talking about how we all are here at this specific time for a specific purpose. That is doesn't have to be that we are a huge speaker or a major worship leader - that we are entrusted by God to empower those in our little circle. To encourage and lift up our husbands, to form and mold the souls of our children. To be examples to our friends and coworkers. She talked about trials and heartache and how at times we may feel "cheated" because our life is not what we imagined.  I thought of my little "neck of the woods" and what all our own family has endured...in terms of sickness, finances, heartaches, disappointments, etc.   I thought of my family and my friends... all who have taken their own journey and paths through life. (I would have to say most of us probably are not where we thought we should be at this age and stage of life.) 

And then she said:

"You were not cheated...

You. Were. CHOSEN"

It hit me like a ton of bricks.  Life sucks. Illness sucks, heartache sucks, trials/suffering ...it all sucks. But we have a purpose and a plan. We can take our situation. Our life. And make it a light for our circle. We can give Him our burdens, our cares and press on to make a difference in someone else's world.  We can look at our current situation and know (trust) that God is positioning us to be here at this very moment while he is preparing us for something greater.

I just know how I've felt with lupus in the past.
I'm not cheated...I'm chosen.

You are not cheated...you are chosen.

To be a daughter, son, sister, brother, mom, dad, aunt, uncle, friend, neighbor, co-worker. 

You.  Are.  Chosen.

Your circle. His plan. This is what He chose you to do. Maybe not forever but for right now and I truly, honestly believe he is positioning us all for something greater.

I felt the nudge to share.  So... I did.
❤️

Where are we?

Here! We are here! :)

Thankfully at this very moment I'm with my little family at the beach, enjoying the salt water, the fresh air and the time that I've been craving with the boys and Chris.  I've felt so isolated these last 6 weeks being sick and in the bed.  I'm excited to say that I am feeling MUCH better!  My energy level is rising every day, I've got almost zero pain and there is HOPE in my heart.  I'm fighting.  I'm going to keep fighting. I'm going to prove Lupus wrong. :)

Tate, Tanner and Tucker enjoying our first day.

I'm still on a ton of meds~ hoping to wean off of them sooner rather than later.  But I've also taken control of some things that I wanted to share.

So I've changed the way I'm eating.  No grains, no sugar, no dairy.  Basically I'm going back to the basics.  Meat, Veggies, Fruit, Nuts and Seeds are what my food consumption consists of.  Let me tell you what a change it has been in just a few days:


As you know, I've had a recent lupus flare that left me spending 6 weeks in the bed while visiting the ER twice and having home-health delivering upwards of 180mg of IV steriods over 3 days.  This time lupus attacked my lungs, lymph nodes and voice box.  It's been painful and debilitating. I'm taking 22 pills a day and have had no voice for weeks.  I'm done waiting on things to get better.  I'm fighting. I decided it might be time to at least look at it- so I ordered the book,(after much encouragement from a good friend) The Primal Blueprint by Mark Sisson.

Last Friday (5/25/2012) I made the change.  Mind you I was in the bed for 2 days before (plenty of time to read).  After 1 days of eating "primally", I was up and out of the bed with a little bit energy and almost no pain (and on my way for to a beach trip that I wasn't sure I was going to be able to make).  Today it's Wednesday- Day 6 of "primal living"- My voice is completely back - no hoarseness at all.  I feel "almost normal" which is a HUGE difference from this time last week when the most I moved was from the bed to the bathroom to the couch.  I'm convinced that my life is about to change in a dramatic way.

My hubby, Chris (who is fit and energetic) is completely on board and my boys are about to get a big awakening from the pop-tarts/cereal breakfast. :)

This is just the beginning of my success story (seeing as it's not even been a week yet) but I am convinced in the method and I'm walking proof that what we eat can change everything within our being.  

I know that I don't have total control of this disease and what happens in the future.  Thankfully God is WAY more qualified than I am in handling my life :) - He's proven himself over and over again.  However, it does feel good to know that now I'm eating what He's providing.  His hand is on everything - not the hands processing and adding things to our foods.  It's not hype. Just the truth. I challenge you to check it out.  See what you think and make your own decisions.  Give it 21 days.  Heck give it a week!
The more I learn the more it makes sense to me and I bet it will to you too.

Just wanted to share what I'm learning through this trial:

1.  God is ALWAYS in control and He NEVER leaves us.  In fact, when things get hard, He's the one that     carries us through. He's the one that's strong when we are weak.

2.  My friends are some of the BEST people I could ever imagine knowing.  We have been completely overwhelmed by your love, support and acts of kindness during these past 2 months. From carpools, playdates, cards, food and most of all , your prayers.  Thank you from the bottom of our hearts.

3. My family is unbelievable.  Simply unbelievable.  I can't imagine what it must be like for them to watch and not be able to "fix" the problem.  Thank you for keeping me encouraged, for letting me cry and for just holding my hand.  And thank you for celebrating the little steps forward with me because as much as the news was bad...I couldn't wait to share the small victories with you! :)

4.  My boys.  All 4 of them (including Chris).  :)  I'm so excited to be able to play with them again.  To watch them enjoying life. To be able to participate and not just sit on the sidelines of life is an amazing feeling.  So thankful for each of them and the special love they give to me.  So proud to be a Mommy and Wife.

So that's it.  The update.  I told you I would write again when I was feeling better and enjoying summer and that is TODAY.

See ya soon!
t

Seeing the Light at the End of the Tunnel ~

Wow...it's been a few months since I posted.  Time flies when things are crazy! ha!  I promise I'm going to try to be better at this ~ had every intention of posting at least once a month!  Good intentions....

So life's been a little "on-hold" lately.  Lupus has reared its ugly head and decided to take its place in my lungs (Lupus Pleuritis)  Needless to say - not a fun experience.  I've been in the bed for 4 weeks now...showing some improvement lately.  Baby steps, but improvement none the less.  Not to bore you with the ins-and-outs of this disease but if you don't know a lot about it - its something to behold.  It's known as "the most misunderstood disease" because it mimics so many other diseases.  It can take years to diagnose and no two lupus patients present the same way.  It can attack ANY part of your body (lungs, heart, skin, kidneys, etc)  It's basically an attack of your immune system on all your healthy cells, which causes inflammation, scarring and hosts of other issues.  It comes and goes in a series of relapses and  remissions so lots of people "look great" and are still very sick.  As of today,  I'm on 22 pills just to keep things at bay and most of the meds are toxic in their own right - causing a load of nasty side effects and putting me at risk for other diseases.   

May is actually Lupus Awareness Month. www.lupus.org   Some might say perfect timing for people to see how yucky lupus can really make a person feel.  I know lots of you have been praying for me as I've been keeping things updated on Facebook.  You have no idea how much it means to read your encouraging words and know that you are in my corner and are understanding of this disease as best you can.  Amazing friends and family I have. :)

And with saying that- let me brag (just a bit) on my wonderful hubby, Chris.  I love that man.  He is my ROCK.  He has been with me every single step of the way and loved me through it all.  He knows just what I need when I need it ~ whether its something to eat/drink, hold my hand, give me a hug or to just sit with me and let me cry.   Sometimes he's bossy and makes me sit down and quit talking but I know he's right.  (Just don't tell him!) ha!  In the midst of the past month, he has taken over and taken care of everything.  The kids, the house, his job...all while not complaining, watching me suffer and knowing there is nothing he can do to "fix this".  Hard for a loved one, I know.  He's a very special Husband and Daddy and I am so thankful for him.  We celebrated 14 years of marriage on May 9th and I honestly can say that I love him more today than I did on our wedding day!  Thank you Chris for all your love and support.

Also want to say how thankful I am for Mom, Dad and Mandy along with all my wonderfully giving friends  and family who have stepped up for car-pooling, dinners, breakfasts, phone calls, emails, love and prayers.  The MacNicol House could not be functioning without every single one of you and your thoughtfulness. Always asking "What can I do for you?"  We are overwhelmed by all the love.

Our boys ~  oh my they are growing up so fast!  Just finished baseball season and unfortunately I wasn't able to attend the last few weeks of games, which I hated.  But they are such troopers! Tucker wakes up every morning, runs to our room and says "Good morning Mommy!  Are you feeling better today?"  So very precious.  They are my SMILES.  Tate and Tanner have been so helpful - they even dusted and vacuumed the house for me this week!   :)  They have been handling this all remarkably well.  Had a few worries and concerns (of course) but we are being honest with them and answering all the questions they have.  This is the Mom they know, and I struggle with that, but I also know that God has a bigger plan and he is preparing them for their own lives one day. We are trusting the He will use these times to make them better Husbands and Daddy's in the future. :)

One more note and then I'm done.  (I know this is a long one....)

On  June 9th we are taking a stand against Lupus while participating in the Lupus Walk here in Birmingham.  We would LOVE for you to join us!  Even if you can't be present you can still help by making a small donation to help us raise awareness and to find a CURE!  

For more info:  LUPUS WALK FOR NOW BIRMINGHAM

Next time I post- hoping it'll be to tell you how great my health is doing and how we are enjoying the first of SUMMER!! 

t

What I've learned from Lupus

There are a few things having a chronic disease will teach you.  I thought I'd share them.  They are not in any specific order.

1.  You will learn how to "fake it" better than most.   There are only a select few that see you at your worst.  The rest see you struggling...with a smile.

2.  You will count your blessings...sometimes by the minute.

3.  You will see God's promises and TRUST them.  Sometimes through the pain, that's all you've got.

4.  You will feel helpless for not being able to do the things you once did.

5.  You will be frustrated that those close to you can't understand  AND be grateful at the same time.

6.  You will feel guilty as your children play outside and you lie in the bed.

7.  You  will hate texting your friends to tell them that you can't make it for lunch because you need to go back to bed.

8.  One day you will feel like you can take on the world...the next day like you could sink to the bottom of it.

9.  You will find out that those who love you...really love you.

10.  You will finally understand what it means to depend on others even when you don't normally like to ask for help.

11.  You will be humbled and amazed at what you can go through and come out stronger on the other side.

12.  Once you allow other's to help, you'll be amazed at how wonderful it makes them feel.

13.  When the simple things exhaust you, you'll come to appreciate the larger tasks.

14.  You become an excellent planner...as every day has to have a balance.

15.  You appreciate your family and friends more than they will ever know.

Walk for Lupus Now
2011

16.  You will look healthy, so most people will not have a clue that you are sick.

17.  Even though other's may not know, you NEVER forget you have this disease.  It's with you wherever you go.

18.  Your "good" days will never be the same.

19.  Your life has to change.  Period.  It's up to you how to keep living it.

20.  Even through Lupus or another chronic illness, you have to remember that God works all things to the good.  Always.

I've recently had the revelation that:

Because of Lupus, I am a stay-at-home mom which was always my dream.  

Because of Lupus, I have made some amazing friends that I might not have otherwise met.  

Because of Lupus, I am part of a support group that can help encourage others that are struggling with this disease.  

Because of Lupus, I know how strong I really am.  

Because of Lupus, my Faith is stronger that it has ever been and my relationship with God is like its never been.  

Because of Lupus, I am okay with just being me.

The "Walk for Lupus Now" in Birmingham is June 9th.  

If you would like to join my team and walk with us or make a donation; you can sign up here: http://walkforlupusnowbirmingham.kintera.org/faf/donorReg/donorPledge.asp?ievent=1012285&lis=1&kntae1012285=02DABCF8B92D433088AEC9CDD524A498&supId=265750248    

As always, thanks so much for your love and support.

Refreshed.

Wow.  What a feeling!  I just got back from a girls weekend with a few of my aunts and cousins and it was EXACTLY what I needed.

A refreshment of sorts.
A get-away.
A chance to regroup, relax and refocus.

I haven't laughed that hard in months!  Just thinking about laughing so much is making me laugh now! ha!

It's really important to "get-away" sometimes.  To take a step back from our bubble and to see the world for what it is.  A temporary place.  A place to enjoy the moments -not to rush through them.  It was really just a great weekend.  And you know what?  I really missed my little family.  I couldn't wait to walk through the doors and have them tackle me on the stairs.  It was great!  The get-away and the coming home. It was all just so great.  :)

The past few months have been so loooonnnngggg.  A fear-filled nightmare where every morning seemed to have something new.  I am thankful and ecstatic to say that that nightmare seems to be over.  Tucker has been symptom free since the beginning of January.  No joint pain.  No stiffness.  God is good.  Always.

We have a follow up with the cardiologist in February but are expecting nothing but good news.  The rheumatologist follow up will be in 6 more months but he is hopeful that the joint issues are behind us.  Wow.  What a difference a month makes right?

We celebrated two birthdays in the past month ~  Tate turned 9 on Dec 31 and Tanner turned 7 on Jan 11.  Busy times at this house.  We had an adventure at the Tennessee Aquarium to celebrate.  It was fun fun fun!

Basketball season is in full swing.  This is Tate's first year to play and he is loving it.  He's getting better at each practice and game.  We are enjoying it too!  I had no idea how much I would like watching basketball (it's never been the sport of choice)  But when your kid is out there - its a different ballgame.  REBOUND!!!

Tanner got a visit from the tooth fairy in January.  He's only lost two teeth so far and this one was hanging on for dear life!  I, for one, was thankful when it decided to take a leave of absence.

Tucker is now wearing big-boy undies!  Yipppeee!  I am officially done with diapers.  Whew ~ What a feeling!

It's really cool looking back at this blog that I started just a few short months ago.  How quickly life changes.  The highs and the lows.  It's definitely been  healing for me to be able to type it all out.  To vent at times.  To express how I have felt (even the ugly parts) and to see where I am today.

Life will always throw us the lemons, right?
We've just got to figure out how much sugar to add to make it into a REFRESHment.

Stuck

That's how I feel right now.  Stuck.  Not moving forward...not going back.  I'm in the present (which is where we all should be) but I'm so lost in it I'm not sure which way is up.

The past two months?  A complete whirlwind.   An emotional roller coaster.  Can I please get off?  I'm tired of riding.

To update those of you who are new:  Go read the last post and then come back.

For those of you who are up to date:  When I wrote the last post we were on our way up.  On our way off the roller coaster.  Tucker was feeling better and better each day.  We were seeing real improvement... then BAM!

On Dec 3, 2011, Tucker wakes up and can't stand.  He's crying in pain.  His hips, knees and neck.  It all hurts.  He doesn't want us changing his diaper because to lift him hurts.  I sit him on the couch and go get the phone in the other room and he falls off the couch because he can't move.

SCARY.

AGAIN.

After talking with my pediatrician (which is the BEST in the world!), we head to Children's ER where we talk with a Pediatric Rheumatologist.  Is this still Kawasaki Disease or is it something more?  No one knows.  There are no answers.  We start Steriods and we wait.  The Doctor calls us on Monday.  Tucker is no better so we start Naproxen.  Again we wait.  I've been "waiting" so much lately I ought to be on a ride in DisneyWorld by now!

Jump to today:
Tucker's middle finger on his right hand is bent most of the time.  Strange.  One finger. One hand.  His left hand will periodically ball into a fist.  No rhyme.  No reason.  He just can't move them or straighten them.  His hands hurt.  Occasionally, he limps.  He doesn't complain...but his gait is definitely not normal.  Please can somebody PLEASE help my baby boy?

So at this moment we are in the process of scheduling an MRI of his hand. We wait.  Some more. We ought to be really good at this by now.  I mean, I was diagnosed with Lupus 5 years ago.  It took a very long time to figure things out. I know what to expect in this process of waiting but this is my son we are talking about!  I can hurt and cry and be exhausted but not him.  He's two.  He's not supposed to know what it feels like to be in chronic pain.  He's not supposed to wonder how he's going to wake up and what his day will be like.  I know he's not thinking of that right now, but if this doesn't go away...he will one day. :(   and that breaks my heart.  That is not what I want for him.

But as I type, I'm reminded.  It's not about what YOU want for him.  It's about what I want for him.


Okay, Okay.  I'm listening...and I'm thinking of Mary.  How she must have hurt for her baby boy!  Tears.  True tears from deep within.  Painful tears for the fear of your baby going through something so horrible that you have no control over.  And that's the bottom line, I guess.  I don't have any control.  God allows us things that He knows we can handle.  Things that allow His Glory to shine.  I'm not seeing it yet.  Just being honest.  I'm in the middle of it and I'm just not seeing it.  But I'm going to trust.  Yes...even in the middle of it.  I'm going to trust Him.

Please continue to pray for Tucker's healing; for his comfort and his peace.  Please pray for Chris and I - that we will be patient in waiting.  That we will keep the faith so that others may somehow be blessed by what we are going through.

I'll keep you posted.  Probably when we are done "waiting".