Tuesday, April 8, 2014

Temptation and Being Defined

The last month has been filled with all kinds of emotion.
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We've been {mastocytosis} sick, and then we've had days where we were surprisingly well; our life has felt much like that of a pendulum swinging back and forth.

Chelsea started having reactions and migraines and Gavin is showing signs that is stomach acid levels aren't stable anymore. He also had his first reaction today in a long time.

I started going into anaphylaxis on Sunday morning, probably because of the weather change, and thankfully, I was able to get in enough meds and IV fluids to calm it down without an epi pen...and in the process, I discovered my epi pen had expired.

OOPS. Praise God for rescuing me on that one....
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We've been on vacation, and on that vacation, we celebrated Chelsea's 12th birthday with her best friends. {All the photos from her party at our happy place vacation spot will be in my next post}. :)

We've spent a lot of time homeschooling, going to doctor's offices, I have had more medical tests, we've run a million errands, had play dates, driving from here to there over and over, and I even re-started photo shoots since I have started having good days again.

We have read of suffering, cried over the loss of loved ones, and for the loss that others dear to us are experiencing.

Last, we are preparing for my mom's kidney surgery on Thursday and because she is an emotional wreck over the fear of something going wrong, it's making me an emotional wreck and scared that something will go wrong.

It's pretty much all the normal mom stuff with some extra added crazy due to our diseases and illnesses!
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Last night, I had SO much on my mind just with my own body, my own disease, and what the last 11 months have been like since I got deathly ill and almost died. Then I started tripping out over how long it took me to find out that I almost died because I have no recollection of any of it....which led to me being dumbfounded that I can have no recollection of any of it.

And then when I realized that it will be a year in one month since it happened and that I still haven't recovered from it yet, I wanted to freak out. And then I started thinking about everything else I wrote about above, and it was all I could do to not explode.

So I read my Bible and I prayed and then I posted this on my Instagram and Facebook pages:

Happy, fearful, thankful, anxious, overwhelmed, grateful, sad, mad, relieved, regret, guilt, content, contemplation, humility, reminiscing, wonderment, shock, awestruck, reprieve, frustrated, discouraged, jealous, panic, pain, fatigue, weakness, energetic, excited, encouraged, rejoicing, crying, always trusting, always clinging to truth, and sometimes, all in the same day.  #mylifewithachronicillness


I am here, I am healed (not cured, healed). We have happy wonderful days filled with laughter and smiles and lots of snuggles. I have a lot to be thankful for and I AM thankful for SO much...so much bad that could have happened that didn't, so much that I have that I may not have gotten.

I love so much of my life and I love my family and friends that are in it....but I have to confess that I caught myself in the waiting for "the other shoe to drop" mode. I needed a heart-check because I felt my attitude giving more attention to all my "what if's"....what if we stop being stable, what if Gavin gets really sick again, what if Chelsea does, what if I do, what if this and what if that, and on and on.

That kind of thinking is something that should never get ANY of my attention. EVER.

But that's the way Satan tempts me the most.

Because we have had so many illnesses and rare diseases, serious reactions and some near death experiences, when things calm down, or when mild or even moderate episodes start re-appearing, I wonder when the next serious illness or reaction will occur.

It's horrible. The doubt and the fear are dreadful. I hate it.

While I am human and a sinner saved by grace, it doesn't make giving into this temptation okay.

However, it does make me think on this verse more often as I pray for more faith and less fear:

Mark 9:20-24 NLT
"Have mercy on us and help us, if you can.”
“What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”
The father instantly cried out, “I do believe, but help me overcome my unbelief!”
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I have to say that I think about being chronically ill a lot, especially when one of us isn't feeling well (which is kind of always in one way or another). So I have frequented many on-line forums and blogs, written by mostly women, who have chronic illnesses because I am either looking for support or for others to support, or sometimes I am looking for answers to questions that I have about my disease or I am wondering about any new treatments that work, etc..

And many a time, I have come across the statement, "My disease doesn't define me and I won't let it." Or "I won't let it change who I am" or "I won't let it control me".

Frankly, I just don't see how it's possible to have it not do all of those things but I decided after some contemplation that I personally don't see that as a bad thing.

Even though I am weak on my own strength, my disease does not define me as weak; on the contrary, in, through and because of Christ, when I am weak, I am defined as strong.  

My weakness also gives the Lord an avenue to display His work and His perfect power in my life, not only for my benefit, but for others as well so living with all of it is not for nothing. So having a chronic illness defines me as one that was created with that specific purpose in mind. 

Biblically, my struggles with a chronic disease defines me as "one who endures with perseverance, who has a strength of character, and a confident hope that doesn't disappoint". I love that. Without suffering, this endurance-growing, character-building, and confident hope-filling wouldn't be a part of my daily life.

Being chronically ill constantly reminds me that someday, I will be made new; I will be given a new body that doesn't get sick. Ever. Someday, when Christ returns, He will make ALL things new and we will be without all suffering for all of eternity. Thus, my illness makes me yearn for that new body and that eternity, and I don't think I would be doing that if I was without suffering.

Don't misunderstand; none of this makes me love my illness, or my son's, or my daughter's, or my husband's; I struggle to "rejoice in suffering"....in fact, I have to confess that I usually don't.

However, the Lord is sovereign and I know His loving hand is active in my daily {sick} life working out all things for good, according to His purpose for me, and so the many ways my illness defines me through Christ encourages me.

So while this "weeping remains for a night", I KNOW that "joy will come in the morning" and being transformed into one that clings to this because of her illness isn't something I am embarrassed of....

I actually like the way it defines me because of Christ.
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2 Corinthians 12:9-11 NLT
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Romans 5:3-5 NLT
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

John 9:1-3 NIV
As he {Jesus} went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”. “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

Romans 8:28 NLT
And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them. 

Psalm 30:5 NLT
For his anger lasts only a moment, but his favor lasts a lifetime!  Weeping may last through the night, but joy comes with the morning.

Revelation 21:5 ESV
And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.
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Friday, March 14, 2014

Ten on Ten

This is my first 10 on 10 post...I took all of these pictures this evening on a short and simple get-out-of-the-house-even-though-you-don't-feel-well trip to see the sunset at the beach five minutes from our house. All four of us were there together so it was peaceful and beautiful and perfect.
When we left, I was so happy and content and I felt better even though I am still sick. My daughter decided that whenever I am in a bad mood, we need to go to the beach at sunset with my camera in my hand and let me shoot away. 

I concur. 

It worked well. :)

ten on ten button

Thursday, March 13, 2014

Count, Give, and Pray


This song, the lyrics, the melody, of One Thing Remains, is such a comfort to me. 


I typed out the lyrics below this video.



One Thing Remains
Higher than the mountains That I face, 
Stronger than the power Of the grave, 
Constant in the trial and the change, 
One thing remains, One thing remains

Chorus 
Your love never fails, It never gives up, It never runs out on me

Because on and on and on and on it goes 
It overwhelms and satisfies my soul 
And I never, ever, have to be afraid
One thing remains, One thing remains

Bridge
In death, in life, I'm confident and covered by the power of Your great love
My debt is paid, there's nothing that can separate my heart from Your great love

I think the lyrics say it all. WOW

I have felt so crappy lately that it's hard to keep my spirit and soul encouraged. So I listen to songs like these above. Bethel Music is amazing...Come to Me and Fall Afresh are two more favorites. Songs speak to my heart in ways that simple words can't. It stirs me into a good place. I need that right now. A lot.

I get excited when I find out good test results but then discouraged when there isn't anything to explain the symptoms. I get sad when I can't do anything with my kids or go out and take pictures, or even do something as simple as drive to piano lessons or go to the grocery store without even knowing why and if there is anything I can do to change it. 

This verse SO explains how I feel to a tee:

2 Corinthians 5:1-5 
"For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing......while we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit."


I'm dreaming of a new body....one that has energy and doesn't hurt and is strong and absorbs nutrients and can eat and digest without pain, and that doesn't flush and itch and grow tumors and cysts in scary places...one whose muscles don't jerk and spasm and vibrate, whose nerves feel things correctly, whose legs don't collapse, who can walk without a cane all the time, that can sit without pain and stand without pain, one that can think and see clearly....I want a new body but I want it on this earth. 


My husband has been my rock on this earth. He keeps me in the here and now, he encourages me when I am discouraged, he hugs me when he sees the hurt in my eyes. I couldn't have asked for a better husband. Today he drove us around for three hours so we could go to the pharmacy, and the grocery store and to both kid's piano lessons after working an 8 hour day an hour away and waking up at 4:30am.

Dedication.

In sickness and in health, for better and worse, til death do us part.

If for nothing else, the Lord shows His love for me through this man that He made me one with in Him and I am forever grateful. I don't take this for granted, I know it isn't common and I hurt for those who have to suffer without a loving and supportive spouse by their side. I pray for them; some of them are dear to my heart.


We all are blessed, just in different ways, and I have to remember that when I feel the way I do. How am I blessed in this sickness that never ends?

These four top my list...they are priceless. They don't complain, they cheer me up, they help out, they say they are doing for me what I always did (and do) for them when they don't feel well. Their big hearts overwhelm mine. I love that God put us together and I will forever be grateful for that.



And reprieves do come.

Gavin is doing better than he ever has in his whole life. That is SUCH a blessing. Chelsea, who has more symptoms than before, can still live life without it interfering as long as she takes her meds. That is a blessing.

And me? I am sure a reprieve is on its way...at least I hope and pray it is.

But my IV Fluids and meds, my oral meds, my port-a-cath, my awesome home health nurse...all blessings.

Living in a beach town? A blessing. Loving and supportive parents who live 5 minutes away and would do anything for us? A blessing. Kids who want to spend the day with their almost 80 year old grandparents? A blessing!

A church who rallies around us, and friends who pray and show up when we need help? Blessings...all blessings.

I could go on and perhaps I should but I think you get the picture. I certainly do. Life is full of blessings, we only have to choose to look for them.

And I NEED to look for them, I HAVE to if I am going to get by.

Because this disease? Mastocytosis. It's not for the faint of heart. It is all encompassing and never-ending. It interferes with every body part and every aspect of our lives every single day, and all those I know who suffer with it too say the same.

So for now, I count and count and count my blessings. I give thanks. And I pray...for a nice long reprieve. 

Pray with me!

Thursday, February 27, 2014

Life Lately.

It's been an interesting couple of weeks as we've had a lot of medical stuff going on...lots of appointments and issues. Here we were at the children's hospital clinic to see our Mastocytosis doctor and we didn't want to catch any viruses, so we wore these fancy masks around the hospital and didn't touch. a. thing!


The most important (and unfortunate) part of the past couple weeks is that the 3 masses on my liver are not what we thought they were; we thought they were benign hemangiomas, but they didn't light up as such on the triple phase CT scan, so now, we don't know what they are. We also don't know if they are even benign. 

So, now I have to have a BUNCH of tests--an endoscopy, colonoscopy, MRI's, a mammogram, an ultrasound of my ovaries and uterus, a possible bone scan, and 12 vials of blood were taken from my veins yesterday for lab tests all with the hopes of figuring it all out. 

Lord-willing, it will all turn out fine....and by fine, I mean no big deal, benign, nothing we need to do anything about. I am praying for that at least...


However, I know it will be okay no matter what because the Lord is always good.


I have been busy managing fatigue and pain between all the doctor appointments, homeschooling, photo shoots, designing and editing photos {like this one of a sweet 3 day new baby girl at the beach}...


that doesn't even count the normal mom and housewife stuff, which I have been kinda of failing in lately. One person can only do so much though, and thankfully I have a very supportive family--one I am so thankful for. 



We had a sweet Valentine's Day...super simple but fun.


We didn't go to the beach as a family since before my last post...not once. :( But I did go there for two photo shoots. This is after one was over and it was cold but heavenly out...



and this was at a different beach on a really warm beautiful day (this is the same session that I took that newborn photo in at the beginning of this post).


It was mostly because I have been in pain and not feeling well, and Chelsea had a sick day (it was actually before the mask day at the hospital...I am writing slightly out of order!), which turned into a sick day for Gavin, but in the process, I captured this super sweet picture of our faithful dog guarding strep throat Chelsea on our bed...


I couldn't love this dog (or my girl) more. 

I designed the following two pictures in the Rhonna Designs app on my iPad with beach photos I took...I love them and they were a quick emotional pick me up when I was having an anxious moment last week after the triple phase CT scan results;



and I have been singing the song based on what I wrote on the above photo, "Bless the Lord, O my soul, o my soul, worship His Holy Name! Sing like never before, O my soul, worship His Holy Name" ever since. 

Do you know that worship song? We sing it in church a lot and I love it.

Music and design and photography are my outlets when I am stressed, when I am anxious, when I am sad, mad, even happy and energetic. It makes me happy, it excites me, and the Lord uses these things to bring me peace and contentment. I am so thankful for it, I am smiling right now as I type about it!

I will end with some more new prints...which are all mostly in my Etsy Shop...some maybe not, I will need to add them all soon.

I love the song "Oceans" by Hillsong United so I designed more prints with more lyrics;

 

The song reminds me of a story in the book of Matthew in the Bible, a story about Peter. 

Jesus was on the lake with His disciples when Peter told Jesus to walk on water to prove who He is. Jesus not only did, but told Peter to do it too. So Peter started walking--on the water--to Jesus--but he could only do it if he kept his eyes on Jesus as he walked. He did for a few steps but then he started to look around, he grew afraid, and started to drown. When Jesus rescued him from the water, He asked Peter, "Why did you doubt, oh you of little faith?" It ended with Peter knowing Jesus is Lord.

If you read through all the lyrics of the song Oceans, it totally looks like it was written with this story in mind and I love that because that story is one of my favorite stories in the Bible. 

The ocean is also one of my favorite things in the world so putting the story to music and giving it that title is icing on the cake for me. The song is so beautiful, the lyrics so poignant, and it comforts my soul whenever I listen to it.  

It reminds me to fix my eyes on Jesus no matter how challenging life is or continues to get, so I can stay above the waves and not get knocked about in the storms of life. 
  

And man, are there a lot of storms!!!

Regardless of how these tests I am taking turn out, I want to be able to always be at peace with the Lord's plans for my life. I am at peace now and I pray that through the Holy Spirit working within me, that it stays that way.

I also pray with all my heart that my desires for my life line up with His, because I want to live a really long life with my family living a really long life, all of us all together here, but if His plans are different, I don't want that peace to go away. I want to trust in Him in all times through all things and I want to be able to say...

It Is Well With My Soul

always.

Another design:


It takes courage and confidence in the Lord to feel this with all your heart no matter what your circumstances are. It's something I pray I can and will feel from now on.... 

Wednesday, February 12, 2014

His Grace

I have a new camera with a new lens and a new editing program and I am in love with it all. It was an early birthday present from my family as I turn 40 this year...it's the best gift ever. I prayed for it for a long time and as His grace would have it, I got it 5 months before my 40th birthday so that I could use it for this happy new year.



I have been taking my kids to the beach so I could get to know the camera by taking pictures of them...thankfully they are cooperating. They are kind of at the age where they don't necessarily enjoy me constantly taking pictures of them. :)



But they love me so they oblige.

Sometimes. {Bribery also works well}



It's been a rough week, and I will tell you why in a minute.

Before I do though, I have to say that looking at these photos I took at our local beach warm my heart and soul in such a way that I decided not to let all that is bad take over all that is good in my life.



When I stand on the shore with camera in hand and look around me, regardless of how I feel or what is going on, what is bad appears only as a tiny speck on a huge bright canvas of all that is beautiful and good.

That's one reason I come and stand here when life gets tough.



I gain perspective. 

My life span on this earth is but a second compared to the life I will live in eternity with my Savior and I constantly need to be reminded of that.

This life isn't all there is, for any of us. 

What matters most is not whether or not we are healthy, whether or not we have money, or kids, or the best clothes, or the most success--the only thing that matters--the only thing that can never be taken away from us--is Jesus.

And He loves me...He loves you. He has a plan for each of our lives, and if you live for Him, He reveals that wonderful plan little by little. It's by His grace that we have Jesus and it's by His grace that He even has any plan for us, let alone a good and glorious plan.

Looking out to to where the ocean never ends makes me feel like a speck in this huge universe, and while that might scare some, it comforts me. When I look ahead at the horizon, I feel engulfed by His love. And all the bad, the hard, the yuckiness of this life...it all just slips away temporarily and in its place I feel peace. It's these moments I cherish most.

These moments where I feel "peace beyond understanding" and all because of His grace.



In my last post I said that I am still in a lot of pain in the area where I had two surgeries last Spring and that I was going through testing to figure out what's going on. Well, I had the first test, an ultrasound, and the results kind of took us by surprise. My pancreas, bile ducts, appendix appeared normal but the test revealed that something is wrong with my liver....so not what we were expecting.

I have three benign vascular (blood vessel) tumors on my liver, and they have been there for several years; the problem is that they have grown....a lot....just since this past Spring.



If they burst, since they are blood vessel tumors and since they are located on the liver--which bleeds easily all on its own without blood vessel tumors on it--it would be life-threatening. Scary. Hopefully that just won't happen!

They can also affect my liver functions but that doesn't seem to be an issue right now, though more testing will tell us for sure soon.

The unfortunate part is that it seems that the growing tumors combined with scar tissue on my liver and the surrounding areas are both the cause of my constant pain, and both can only be remedied with a delicate and potentially dangerous {in so many ways} surgery.

That freaks me out.

But I won't borrow trouble by listing all the many ways that explain why it freaks me out. Instead, I will stand back and look at this photograph so I can feel small again.



I have been listening to the song "Oceans" by Hillsong a lot lately, and it tugs at my heart strings. This is one of my favorite lines from the song, so I made a print out of it and it sits framed in my house as a reminder to me in tough times.

If you haven't heard it, find it on iTunes....."Oceans" by Hillsong....you won't be disappointed.



Anyway, I am having a triple phase abdominal CT scan on Monday so they can get a good look at EVERYTHING and see what is causing what inside me. It will allow them to evaluate the tumors on my liver and detect any other potential problems.

Since I have Mastocytosis reactions to contrast, and I have to drink contrast AND have IV contrast, I will start getting steroids the night before, be admitted early, get more steroids the morning of, and then get IV benadryl through my port-a-cath before they administer it, and after as needed. A nurse will also be with me the whole time.



I am thankful that they are taking it so seriously...though I must confess it feels strange to be dealing with this as a patient instead of as Gavin's mom and caregiver. He's usually the one we are taking precautions for, not me. I am glad it isn't him, but I wish it wasn't me either.



However, instead of wishing, I just need to give thanks and trust....and give thanks and trust in His plan is exactly what I am going to do.

Please pray for me...that I won't go into anaphylaxis before, during, or after the CT scan....that the scan will be accurate and show my doctors everything they need to know...that we can find pain relief for me without needing to do surgery to remove the tumors and scar tissue...and that the tumors will be fine if we leave them alone.

Thank you in advance!

______________________

My sweet girl and I were on a date on this cold evening when we stopped at the beach to see the sunset and suck on lollipops. She is one of the only people on this earth that can drive me crazy, make me mad, make me laugh, and bring me joy all at the same time.

I LOVE her more than words can say.

She's my sunshine.



She loves the beach as much as I do...that's always a bonus. It's our happy place...our favoritest place in the whole world and I love that about us.



The cherry on the sundae is that Tim and Gavin feel the same way. I mean, how can you not love this place?!


I simply cannot imagine living anywhere else...especially when life is hard, which it often is....so we enjoy this place as much as we can whether it's cold, hot, or in between. There is quite simply nothing more beautiful on this earth.....{if you ask me}


Well...if you ask US. :)


I will write another post after my CT scan results...I am aiming for one post a week starting last week, and so far, I am two for two.



Not a bad start, eh?!

The ocean pictures motivate me to write a post, so I think I will stick with taking more...happy rest of your week to you! :)