Saturday, August 11, 2018

Exhausting...

Several months ago someone told me that I am an exhausting person. I wish I could say she was joking, but she was very serious.  Just in case you're wondering if you should say that to someone---don't ---those words are hurtful. While I wish I could forget those words, they just seem to keep replaying over and over in mind. The enemy has used those words repeatedly discourage me over the past 9 months or so.

As I've thought and prayed about being an exhausting person and what that truly means, the Lord has taught me a great deal. I've learned a lot, not only about myself but also about the power of a testimony.

Some folks will one day look back on their lives and realize it was lovely but pretty uneventful. They grew up, got married, raised kids, sent those kids out into the world, worked every day, and then retired. Some folks, on the other hand, will look back and see a life full of ups and downs, twists and turns, difficulty and joy, mistakes and triumphs, pain and exuberance, on top of all the "normal" things life brings. I don't believe one life is better than another, don't get me wrong, but some lives are a whole lot more "interesting" than others.



I'm just gonna go ahead and admit that my life looks a whole lot more like the second route pictured above. It's not because I've asked for it. Its just the way life (so far) has panned out for me. I can see how someone living a life that is quiet and steady, like route #1, may not understand the life of someone that is living out route #2. I can also understand why someone living a life that resembles route #2 might wish they had the easier journey of route #1. But you know, the path we take in this life is a gift from God. Whether it's steady and uneventful or rocky and full pain...life is a gift!

As someone that walks the zigzagging path, I have noticed something really amazing about this more difficult journey. The ups and downs and the craziness that comes along with it all are the perfect scenarios for witnessing God at work! Honestly, these painful and seemingly unfair times are when I've felt God's presence the most. Even during my current battle, I'm more aware of His activity in my life than ever!

So, I'm thinking my life actually looks more like this picture. The red dots represent times when I've seen or felt God. These are times when He has shown up in ways that only He could!


When I think about how many more red dots can fit on the 2nd route, it makes me grateful that I'm on the more strenuous, complicated path. There are so many more opportunities to see God at work! 

Whether your life is smooth and uncomplicated or your life is more like mine, with a hundred different issues, we all have a choice to make. We can share what God is doing and give Him glory regardless of circumstances or we can hide and worry about what people might think of our story. 
God has shown me these scenarios as I've been praying and thinking about being an exhausting person...

Inactivity leads to inactivity
(refusing to listen to or obey God leads to a whole bunch of nothing)

Yielding to God's plan leads to activity
 (Surrendering leads to seeing an abundance of God's activity in your life)

Concealing leads to hiding 
(Choosing not to share what God is doing leads to hiding your story which circles back to inactivity)

Vulnerability leads to a testimony
 (Being genuine and open and allowing God to use your story to bless others gives purpose to the trials in life)

I'm not gonna lie, as I've dealt with my diagnosis of Ankylosing Spondylitis and the treatments that I will endure for the rest of my life, and all of the things God has been teaching me and showing me through this process, I have thought regularly about the person who calls me exhausting. The enemy has repeatedly used that conversation to try and shut me up but I'm choosing not to conceal and hide. I'm choosing to be vulnerable, genuine, and allow God to use my story however He sees fit. 

This is the story He's given me but He's promised to carry me through it. Why wouldn't I want to share as I watch His promises unfold in my life? I'll be ok if some folks think I'm exhausting. Chances are they just don't understand living out a life similar to route #2 or maybe they don't see the beauty in a testimony.

Today I am grateful that God has clearly shown me that I am not an exhausting person, I'm just vulnerable and willing to share. He's also revealed many people that are grateful for my openness and how He has blessed them through it. I'm also thankful for the painful, rocky journey because there are so many opportunities to see Him and share what He is doing!




Friday, August 3, 2018

The Best Medicine


Thursdays and Fridays aren't my favorite. Don't get me wrong, it could be way worse, and for that I am grateful. But still, feeling like your body weighs 1,000 pounds, feeling nauseous, being constantly aware of every muscle aching, having absolutely no energy and being totally dependent on others isn't a whole lot of fun.

There is one thing I love about these "recovery days" though, and it's really the best medicine! My hubby and kids have been taking such good care of me. I don't move from that spot on the couch for two full days other than to go to bed and to the bathroom and when I get up to go to bed or the bathroom, one of my fellas helps me get up and walks with me so I don't fall. I am so weak and exhausted, especially on Thursdays, that I honestly couldn't do it without their help. The older boys also bring me anything I need and help take care of the younger kids. The little ones have been my snuggle buddies, which has been such a sweet blessing while I lay on the couch.

 



Today I am grateful for these precious ones that God has given me. They are making the not-so-great days so much better. I'm also thankful for this scenario we're currently living out. Now obviously this isn't what I wish every Thursday and Friday would look like for my family but I'm choosing to believe this is where God has us stationed currently, not where we're stuck. So I'm noticing countless things that He is up to! God is using this to teach my kids to have compassion, to serve others, to offer help instead of assuming it will be asked for, to understand that some diseases are invisible, and to pray continuously. Those are things that they won't learn truly learn without first-hand experience. God is using this for the good of those who love him! He's using it for the good of everyone in my family. Isn't it amazing how He does that?

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

Tuesday, July 31, 2018

Fun on the "Good Days"

At the beginning of June, I made this long list of fun activities to do with the boys this summer. We've done lots of them already and they have really enjoyed it. Since starting the chemo treatment for AS, I'm not sure how I'll feel from day to day. Thursdays and Fridays are especially difficult and our weekends are usually pretty busy so, that only leaves a couple of days each week to get our #campmommy activities done! So, I decided to pack a few into one day! 

We started with marshmallow shooters! It was so simple but they loved it! We just used balloons, empty toilet paper rolls, and marshmallows. They had so much fun seeing who could shoot their marshmallows the farthest!





Next, we made sidewalk paint. The older boys thought they were too big for this activity until they saw how much fun Tyson was having! All we needed was cornstarch, water, and food coloring. It makes for a fun pastime! 





For our last activity of the day, we made a marble race track. We used pool noodles, toothpicks, marbles, paper, and a box. The kids had a lot of fun racing their marbles! They even asked if we could save it so they could show their neighborhood friends!





To end the day we decided on ice cream for dinner! There is a cute little place in town that makes rolled ice cream. It's yummy and a lot of fun to watch them roll it! This was the first time the kids have had this treat and they loved it!









Today I am grateful for a fun day with my family. I'm not able to do all of the fun things I want to do with the kids every day, but I'm thankful to be up to it some of the time. Earlier today Dylan said to me, "Mom, you're the best mom ever. Thank you for doing all these fun things with us especially when you're not feeling well!" That made my heart so happy. More than anything I want my kid's lives to be as unaffected as possible. I want them to feel loved and enjoy our days together. Making the most of my "good days" is one way I will
 TAKE THIS TERRITORY! 
 (if that makes no sense, read my previous post πŸ˜‚πŸ˜‚)

Saturday, July 28, 2018

This Is How We Fight Our Battles...

I've always believed, to some degree at least, that Spiritual Warfare is real but over the past year or so, I've come to realize that it is more real than most people think. In fact, I believe one of Satan's greatest tactics is to cause people to believe he doesn't exist or that he isn't constantly deceiving and sabotaging God's children. 

1 Peter 5:8 says "Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour." I'm not sure why we as Christians haven't taken this warning more seriously. As Peter says, we have to be on guard to protect ourselves and our families from him. If not, he will use every chance he can to trip us and weasel his way in. We must be diligent and intentional, not letting down our defenses.

The current battle my family is facing is no exception. Satan probably sees this as the perfect opportunity to distract us and cause us to doubt God's goodness.  No one would be surprised if we were angry or frustrated or asking "why us?" No one would hold it against us if we kept all of our thoughts and feelings inside and only used our voices to complain. Everyone would understand if we were full of fear and worry. That's exactly what Satan wants. 

Honestly, that's what people see as the "norm" because that's what is most typical in tough situations. When someone isn't afraid of the scariest things that can happen, that seems odd. When a couple decides not to let worry consume them, others are amazed. When a family chooses to be full of joy and trust God's plan, it's inspiring.

As I've prayed and listened and trusted God through the past few weeks of being diagnosed with AS and starting the treatments, I have felt Him clearly say, "Tori, you will take THIS territory."  

Ankylosing Spondylitis isn't well-known like cancer or autism. No one is familiar with this "territory." There aren't any rallies to raise awareness for this disease or any movies sharing the victories of an AS patient. This territory is a place where Satan has previously had the advantage. He has caused fear and doubt to run wild. He has encouraged torment, shame, guilt, loneliness, pain, and depression for all involved.  This is uncharted territory and God wants me to "take it." In this case, the words TAKE IT mean to LIVE FULLY. 

Jesus said in John 10:10b, "I have come that they may have life and have it to the full."

He also said in John 16:33, "In this world, you will have trouble but take heart, I have overcome the world."

Greater is He who is in me than he who is in the world!
 (1 John 4:4 paraphrased) My Jesus came to this world so that we might have life---abundant life! He overcame the world and all of its troubles! So, regardless of my situation or the diagnosis, I can live abundantly because He is within me!
"Tori, you will LIVE FULLY in this territory!"

So, my family and I are taking this seriously! We're fighting to "TAKE THIS TERRITORY." How do we fight? Like this...


 
This is a picture of my babies praying for me!
(Allison was running away, Evan looks like
he's kicking me, and Tyson prays with his
eyes open but still, they are all there,
 praying for their Momma!)

We're praying together! We're letting our God lead the way! We're trusting that He is in control and using this all for our good! We are asking for protection against the enemy. We are trying to be intentional about putting on the armor of God. We're believing that I already have victory over AS, even though we aren't sure what the victory looks like. We're walking by faith, not by sight. We're bringing each and every need to the One that can do something about those needs. We're praising God for His willingness to walk along this path with us. 

We aren't perfect by any means! Goodness knows we have our moments! (Seriously though, that could be another blog post!) But today I am grateful for a family that is praying with me and for me. I am thankful that when I feel down or need help, they are right there to lift me up and remind me of God's goodness. These kids are 10, 6, 3, and 1 year old but they are ministering to me daily! My husband is holding my hand every step of the way. This is what family is for. This is part of what God is teaching me through this trial. It's for our good. We're learning so much about Him and about each other. 

So, this is how we fight our battles. We pray and we trust. 
And then we wait on the One that is fighting for us! 

Exodus 14:14 - "The Lord will fight for you, you only need to be still."


Tuesday, July 24, 2018

Chemotherapy Isn't Just For Cancer Patients

One week ago today I found out that my immune system is literally trying to destroy my body. When my doctor called and told me that I am suffering from Ankylosing Spondylitis, I asked her to please spell it. I had never heard those words before and had no idea what she was even saying. Since then I have read article after article, watched tons of videos, and joined several groups where I am able to interact with other people that struggle with this disease. At this point, I feel like an expert on AS, even though I know I've only hit the tip of the iceberg of this incredibly rare, complicated and inconsistent auto-immune disease. 

Now that I know so much about AS, it is evident that I have been dealing with this foe for many, many years. I think some of my first symptoms started in high school or college. My back injury in 2009 was probably the trauma that got my immune system going full speed and it never has stopped.  The past 3 months or so, my immune system has really started wreaking havoc on my body. 

I feel so blessed to finally know what is happening in my body and to have a doctor that is validating all my symptoms. My doctor and I decided on a treatment plan yesterday that will hopefully get my pain under control and slow the progression of this nasty disease. She said several times that this isn't an opponent we want to play around with. The treatment is a little intimidating for me but it has to be aggressive to work. 


I had no idea that chemotherapy was used for anything other than cancer. Apparently, it was discovered that chemotherapy was beneficial for AS because of a patient that also had cancer. The chemotherapy used to fight the cancer was also helpful against the auto-immune disease. So now, chemo in pill form is given to AS patients. I will be taking the pills on Wednesday nights and recovering on Thursdays and Fridays. Hopefully, Saturday-Wednesday will be pretty "normal" for my family. (Please pray that things will be as normal for my little ones as possible. I don't want them to be worried about their Mommy or to feel burdened by my illness. My momma-heart is more worried about them than anything else. Please also pray for Bryan. As the sole provider for our family, he has enough on his plate. Please pray that everything we need will be provided and that he would be able to enjoy being home with me and the kids even when I'm not able to help him much. Please also pray for peace and joy to fill our home and that things will go smoothly as we get adjusted to all of this.)

I will also be starting infusion therapy in a few weeks, once my insurance approves it. This will mean going to Duke every 2 weeks to start the loading doses of a drug that will slow the progression of the disease within my body. After the drug is introduced into my body I will start going every 6 weeks for the infusions. The chemo pills and the infusions could potentially be life-long treatments. Sometimes the immune system gets smart and starts to recognize the drugs and attacks those as well. If that happens, the treatment will have to change.

I'm going to answer the questions I know you're asking in your head right now---Yes, the symptoms will be the same as they are with cancer patients, just not quite as severe, hopefully. I may get very nauseous and sick, very tired and achy, and yes, I will probably lose hair but hopefully, the loss won't be too significant. After a while of being on the chemo my body will start to adjust to it and the symptoms will be less. For some people that takes a few weeks and for others it takes a year or longer. (Please join me in praying that it happens fast for me!)

I'm a little nervous about starting these treatments but I believe God lead me to this doctor and gave her the wisdom to recommend what is best for me. It could take up to 6 months to feel the full effects of the treatment but I'm much closer to feeling better than I have ever been before so I'm ready to tackle this! AS often fights back and is hard to get under control. I have met several people from around the world who have been struggling to find a treatment that works for them. My heart aches for them and I pray they will find relief soon. (Please pray that this treatment plan is successful for me---these specific drugs have pretty good track records!)

I've suspected for a long time that something terrible was happening in my body but this treatment really puts that into perspective for me. I wish now that I had shown myself a little more grace all those days that I felt terrible. I wish now I had stopped pushing myself so hard and spent more time resting. It wouldn't have changed the fact that I have the HLA-B27 gene in my body but it would have helped me cope with the day to day struggles of my body attacking itself. I see this journey as a chance to start truly start listening to my body and making self-care a priority. (Please pray that I will be to rest and relax. I have four kids which makes that difficult but I'm also a busy-body and have a hard time sitting still---just being honest!)

Today I am grateful that I can begin this treatment plan standing on God's truth.  He is fighting for me.  He is in control. He is using each and every difficulty for good in my life and for my family. I am also thankful for friends and family that are praying for me, planning to bring meals on Thursdays and Fridays, and those offering to help my family in any way they can. Those simple gestures mean so much right now. (Please pray that I will ask for help when I need it. I love to serve others and don't often ask for help for myself so it doesn't come naturally for me.)

Tomorrow I start chemotherapy. 
I never, ever thought I would be typing those words. Fear tempts me but my God is bigger. He reminds me over and over that He built me for this battle. It might not be easy but I've already been given victory because of the One who loves me. (Please pray for steadfast faith and unwavering hope.)


Thank you so much for your prayersπŸ’—πŸ’—πŸ’—


Sunday, July 22, 2018

Built for THIS Battle

Since being diagnosed with Ankylosing Spondylitis last Tuesday, I have been devouring as much information as possible about this disease. It's sort of weird to think that last week at this time I had no idea what is causing all of my pain and discomfort.  Actually, for at least 6 years I've had no idea what wrong with me but now, this enemy of mine has a name, a definition, and a very intimidating reputation. 


I've also been spending a lot of time in God's Word because as good as it is for me to know my enemy, it's more important for me to know the One that has promised me victory. One thing my God has been reiterating to me, over and over again, is that I was built for THIS battle. That HE built me FOR this battle.

It would be so easy for me to be full of fear and worry and doubt at this point. Honestly, there are moments where those emotions creep in but then I'm reminded that before I ever took a breath, God knew each and every difficulty I would face. So, while He was creating me, He gave me all that I would need to face the trials of life head-on. 

Ephesians 2:10b in the Passion Translation says, "Even before we were born, God planned in advance our destiny and the good works we would do to fulfill it."  

2 Corinthians 4:17 in the Passion Translation says, "We view our slight, short-lived troubles in the light of eternity. We see our difficulties as the substance that produces for us an eternal, weighty glory beyond all comparison."

God has used these two verses to reassure me that He has my destiny in His hands. He is using all of the difficulties that I have already encountered and all the ones to come, to help me become the person He created me to be. The trials are productive. They are purposeful. They are not useless. 

This is the picture God has given me, to help me have a better perspective on this battle. 


I'm learning that the pain isn't from God. That, of course, is a tactic of the Enemy, but God can use even the worst situation for good. He could take it all away with one word but instead, He chooses to grow us and develop us through these troubles. They give us the reminders we need to fully depend on Him for without those reminders, pride would surely keep us from falling at His feet.  We will not be transformed into the person that God designed without the troubles and pain of life. It's worth it though. There is purpose and a plan through it all. 

James 1:2-4 says, "Consider it pure joy my brothers and sisters, whenever you face trials of many kinds because you know that the testing of your faith produces perseverance. Let perseverance finish its work so you may be mature and complete, not lacking anything."

Really James, pure joy?? You want me to be joyful about having a debilitating auto-immune disorder that will continue to rear its ugly head for the rest of my life? 

YES. Yes. This is an example of one of life's trials doing its "job." It will produce perseverance that will help me to become mature and complete.

 This beast that Satan hopes will destroy me is only going to make me stronger.

"In all these things (even Ankylosing Spondylitis) we are triumphantly victorious due to the One who loved us." Romans 8:37

This is not the diagnosis I wanted or ever thought I would be given. It's not elegant or understood. Instead, it seems dirty and hidden. It's lonely and rare and overlooked. It will be an unwanted companion for the rest of my days. There are no races to raise awareness about this disease because AS sufferers aren't able to run. There are no CaringBridge sites to keep up with AS patient's stories becuase this journey doesn't come to an end.  BUT ---I was built for THIS battle. I won't be able to do it on my own but with the help of the Holy Spirit, I have everything I need to be victorious. I'm not 100% sure what victory looks like but it doesn't really matter because, regardless of what happens, God has already said: "Tori, you win!"

Today I am grateful to know what my enemy looks like and what I'm up against. I am thankful for a peace that I truly can't explain and a joy that allows me to look upon the days ahead without fear. Tomorrow my Rheumatologist and I will decide on the plan for treatment, even though it will truly be a process of trial and error to see what will work for my body. I've spent years not knowing what's wrong so I am grateful for the hope that we may find something to help with my pain. Mostly I'm grateful that my God has gone before me and He goes behind me and He is always with me. He has built me for this battle and has constantly reminded me of that before the treatment even begins!


Tuesday, July 17, 2018

When the Diagnosis Pretty Much Stinks....


I haven't felt "normal" in at least 6 years. I know "normal" is a relative term but seriously, this can't be the way everyone feels.  I've struggled with muscle stiffness for hours each morning, serious fatigue for most of the day, whole-body muscle soreness, neck pain and stiffness, and just feeling bad in general. I've been to so many doctors. Every type of doctor that you could think of. No one has ever been able to figure out what causes me to feel so bad. I've been misdiagnosed and prescribed all sorts of medicines. I've been given supplements and exercises to do. I've gone to integrative specialists and done a hundred different diets and tried at least 4 of those all natural programs that guarantee to help all that ails you. I honestly feel like I've done everything I could to figure out and/or fix what was wrong with me. Nothing works.

About three months ago all of my symptoms worsened, I started having severe pain on the left side of my body. It started in my foot which I brushed off as plantar facisitis. Then my first big knuckle on my left hand started to swell and become very painful (it remains that way, even now). Then my entire leg started to hurt, so badly sometimes that I could hardly walk. Then I began to have a lot of pain in my chest and ribcage, especially when I took a deep breath. I remember a few of those days being absolutely terrible. One day I was taking the boys to camp and I honestly wasn't sure I could make it from the church door to the car door. That was the day I knew I had to do something to figure this out.

I went to an urgent care and saw --who I have now decided is-- the best urgent care doctor in the world. He was thorough and compassionate and believed that something much more complicated was going on. He did several blood tests that proved that I needed to see a Rheumatologist right away. The Rheumatologists in my area had a 4 month waiting period for the next appointment. After a lot of prayer, I decided to ask my Endocronlogist at Duke if she would refer me to a Rheumatologist at Duke. She said she would but she felt sure the wait would be just as long, if not longer. The very next day someone from Duke Rheumatology called me to set up an appointment. She said a doctor was very interested in Rheumatology patients that also have Endocrinology issues and she would like to work me in right away. I was seen that Friday. If that's not God at work, I don't know what is! 

At that appointment, my doctor did 42 tests to find out what was going on with me. She gave me an idea of what she suspected I would be diagnosed with but told me it would be a couple of weeks until all the tests came back and she would get in touch with me once she had a diagnosis.

After 2 weeks and 3 days, she called today with my diagnosis. This diagnosis is different than the idea she had given me, therefore it was not at all what I was expecting to hear. I had spent two weeks getting used to the other idea so this diagnosis shook me a little. She told me that I have Ankylosing Spondylitis. What? 
Never heard of it?? 
Yea, me either! 


So, you know as soon as I heard my diagnosis I started googling. I know, I know, I shouldn't do that but you would too! These are the lovely pictures I came across. 







Ummm, can we say panic attack?

Thank goodness the Peace that surpasses all understanding started to take over!

I made myself stop looking at pictures and start reading the facts. And this is the best definition I have found...well, this is actually my paraphrase of several definitions put together....in a way that is easily understood.

Ankylosing Spondylitis is a rare auto-immune disease. Most typically the spine is the focal point of the disease but it also affects the ribcage, hips, feet, hands, and other peripheral joints. As with all auto-immune disorders, the immune system is attacking the healthy parts of the body. The difference with AS is that the body will try to heal itself by growing new bone in the spine and other joints. This can lead to spinal fusion. Chronic fatigue, extreme muscle stiffness, pain and difficulty when breathing, muscle soreness, flare-ups on one side of the body, etc, also play a major role in AS. 



I have spent a few hours today picturing myself as the Humpback of Notre Dame, being mad because this isn't a disease that anyone understands or even knows about, and fearing what might happen in the future for me and family. I've been wondering, "will I become deformed? Will I lose mobility in my spine, hips, hands, feet, etc? Will I lose my eyesight? Will my breathing become impaired because my ribs calcify? Will there ever be relief from this pain I'm dealing with?

Ankylosing Spondylitis is not life-threatening but let's be honest,  it definitely threatens life as I know it, or as I want it.

And that is exactly where God speaks to my heart. Over the past 2 weeks I have been praying and deciding to believe that God knows exactly what He is doing, no matter what. So I still believe that is true,  even with this stinky diagnosis.

A few weeks ago at Bible Study we focused on Mary, the mother of Jesus. When the Angel of the Lord told her that she would that she would carry and give birth to the Son of God, she simply said, "May it be it done to me according to your word." She was a quiet teenage girl. She could possibly have been stoned by her fiance for being pregnant before marriage. She could have been disowned by her family. She would never have a "normal" life. She must have had a thousand concerns running through her mind. Regardless of the fear and worry and unknowns and questions, she just said, "may it be." What probably seemed like a curse would turn into the greatest blessing ever, not only for her but for the entire world. 

So, that's my prayer too. May it be. 
If this is the road I must travel down, may it be. 

I do have to say, I am incredibly grateful for a diagnosis. After so many years of feeling like no one believed me and searching for answers without any, finally knowing what I'm dealing with is truly a blessing. I will go next Monday to learn about treatment options and decide on a medical plan. I am also thankful that my God has been preparing my heart for this. He has been reminding me that He's in control, He's my source of strength, and He has purpose for everything I endure. 

God built me for this Battle. He knew before I was born what I difficulties I would face and with His help, I have all I need to be victorious. 
So, may it be.


Exhausting...

Se veral months ago someone told me that I am an exhausting person. I wish I could say she was joking, but she was very serious.  Just in c...