On Tuesday I had a clinic visit with my CF team. As usual I got my weight, blood pressure, temp, and oxygen checked. All looked fine. Then a look at the X-ray of my lungs, looked fine. Then listen to my lungs, not as good as they usually sound. And then the PFTs (pulmonary function test)...not so good. I saw the lowest number I have seen yet. I lost 9% in about a month (which was already significantly lower than my base line). All of that that put together...my lungs are not doing well, and they need some help.
The reason I haven't been feeling as well, coughing more and just overall feeling lousy is because of the chronic bacteria my lungs fight. Thankfully I'm not contagious and I can't give this bacteria to normal people, but boy oh boy it's rough for my body to fight. There's the daily reminder of the battle that's going on inside me... the coughing to the point of vomiting, the feeling of being air hungry, or the laughing that only leads to another coughing attack. Thankfully, there are times when I get a few months break, when breathing becomes easier and my body feels better for a bit. But there are other times when we can't quite get the bacteria under control, and I'm constantly fighting the infection. I go through weeks of oral antibiotics, months of inhaled antibiotics, and the final step is to use IV antibiotics. Sometimes none of it works. And that's where we find ourselves right now.
I am so thankful... for Gods goodness to me. I can see how He works in our lives in big ways and small ways everyday! Sometimes it's the evidence of His mercy that makes me smile. The fact that He desires to have a relationship with us and walk with us through this life is pretty amazing. His faithfulness is astounding. Every time I think about it, I can see His faithfulness I woke up today!
I think back to what God was teaching me a couple years ago when I had kidney stones (I don't recommend those). He kept on reminding my heart, "you have all you need in me". Whenever we walk into CF clinic and start talking about treatment options, the big questions is what will work? What does my body need? The answer to those questions are almost always "we don't know". But there is one answer my heart knows "I have all I need in Jesus".
To Him we cling! Come on people! Let's cling to Jesus! I am choosing to follow Him with joy and I'm committing to finding His hands at work in the midst of a situation that doesn't make much sense to my human eyes. Let's work together to do just that! Whatever we go through, let's help each other and work together to see Gods hands at work. He is working, He is alive and working!
Thank you for walking through this journey with us. I am thankful to have an Almighty God. Mighty in power and love, and He often shows us His love though His people! All of YOU!
Here's a picture of what life looks like from day to day...
Because my body is working extra hard just to breathe, I burn a lot of energy, which means I need sleep. When I wake up, I am usually coughing a lot because my lungs have been at rest through the night. I can't eat anything when I wake up (for the first hour or more usually) because I cough so hard I gag, and if there is anything in my stomach, then I throw up... which is exhausting after coughing and especially tiring right after waking up... I speak from experience of throwing up my coffee this morning while taking a shower...pleasant shower :)
Then I do 30 min of vest and pulmozyme and saline (2 nebulizers). Then my lungs are tired from all of that, and I sit and rest some more.
Then every couple days I get the feeling of "I MUST get out of the house!" So Peter will take me to Target, or Walmart... or the Dollar tree! I know, but it's exciting for me! Haha...
I also love to spend time with friends, or babies (as long as not one is sick or has any snot of any color coming out of their face).
In the evenings I usually get a burst of energy, and my lungs sometimes feel better in the evenings from being awake all day, and that's when I usually do training with Oliver. It's a special time for us to work together and bond. He loves all the treats, and I love seeing his progress. Right now he is working on going in the other room and finding my bag of medicines. We worked at first with having him bring it to me from a few feet away, but now we hide in it the other room and I ask him to get it and he dashes away to go get it for me. Good boy Ollie!
A few times recently we have been able to go to the beach and I love going and watching all the dogs play, and Mr. Ollie loves it! He loves to get in the water too...even when it's 39 degrees out! Brrr. When we get back to the car is usually start coughing really hard and I almost threw up last time, but ah ha, I didn't! I'm learning some pretty good breathing control to trick my body into stoping the cough, and therefore stoping the vom!
Man o man, those waves. I love watching the waves and realizing Gods power through something as simple as water. I have no control over the waves, but God does, and He also has control over my body. I trust Him! "Lord, help me to trust you more".
Each day is different. Some days I feel quite fine, and some days I can't leave the apartment. But whatever each day brings, I have fun and enjoy it.
Ok, well, that's my update. I started IVs Wednesday, so I will be on them for a few weeks, and we will wait to see if they work! My body reminds me to groan for the time when we will be in full communion and union with Christ in heaven. That will be some amazing communion with my Savior! Romans 8 has been an amazing encouragement for us...be encouraged!
"18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God. 20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. 22 For we know that the whole creation has been groaning together in the pains of childbirth until now. 23 And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. 24 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? 25 But if we hope for what we do not see, we wait for it with patience."
Thank you again and again for walking with us as we fight and I do my best to do all my medicines and treatments.
All my love,
3/30/2014 12:17:41 am
Praying each day for you and your loved ones. (I know you have MANY loved ones) So excited to see How God is working in your lives and waiting to see what is next. Hugs to you my friend.
Great Uncle and Aunt George and Miriam Barrows
3/30/2014 01:42:20 pm
We keep you and your husband in our thoughts and hope for some good days for you. Love, Great Uncle George and Great Aunt Miriam
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The Frey Life
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"May those who fear you rejoice when they see me, for I have put my hope in your word." Psalm 119:74