Hi friends! So sorry all has been quiet on the blogging front. Things have been up and down healthwise and been a bit crazy! This post has literally been sitting in my blog inbox to be published for well over a week. Since then some of the details below have changed and progressed but for now will leave things as they are written and write another update later this week.
Over the past two years, especially the last year, I have been reminded how precious life is. Being sick with a chronic infection that can be terminal can change ones perspective. It makes each moment matter. It makes you live and love the life and people God has blessed you with that much harder.
It also makes you cling to Jesus in a deeper way than ever before. Ever since I have been young I have desired to live for Jesus and put Him first above all else. As different areas of my life occurred I have experienced the Lord in deep ways, but nothing like the past few months. When it seems like all you have has been stripped away, you can fully focus on Jesus with no distractions. It has made me see Jesus in a different way — really see Him, and in the hard of the past couple of weeks that has been such an encouragement to me.
- My emotions have been all over the place lately because in the last two weeks pI began hospice care in my home, and then was transported to Mercy Hospital for what we thought was a bowel obstruction. While I am thankful for Hospice, and the wonderful care they provide, it still makes me sad that I am now a candidate for their services. The hope is that I can be released, and won’t need them after a few months. I do not know what the future looks like healthwise for me at the moment but I will share what I do know. I apologize for the lengthy explanation but I value your prayers and encouragement. I’ve had a lot of questions about what is going on so I wanted to share it with you. I know it can be confusing getting little updates here and there so I hope these makes sense.
- I have a chronic bladder infection that is not curable due to the nature of my bladder from Cerebral Palsy, but the antibiotics I am taking are working well at keeping it down. However, I am to stop this treatment in one month and then re-evaluate treatment options then. Also, there is a chance that these antibiotics will stop working before then. The main goal is to keep it from going sepsis again and for me to have a better quality of life. Bladder infections can change extremely fast so while today it may be holding its own I could wake tomorrow needing to go to the ER. Sadly, we have exhausted a lot of treatment options already and another surgery is not likely. I see my urologist in October but I’m praying he has a cancellation before then. Many of you have asked about me receiving second opinions, and I have but due to the specifics of my case Dr. K in Charlotte is the one most qualified in the state to help me. There are other places out of state that I could try but my insurance doesn’t cover out of state medical care. Although even if I could get a consultation out of state, they would most likely come up with the same conclusion.
- Also, we know that just like my bladder I have a lazy bowel which is why I had my colon removed in 2015. Once that got under control my bladder problems started to worsen and now I’m having issues again with my bowel. I spent almost five days in the hospital last week treating my bowel issues. Initially, the radiologist said I had an obstruction and ileus but Dr. Dobson said it was my neurogenic bowel being sluggish and not moving properly. Even my digestive system is a bit sluggish but since things are backing up that is causing a lot of fluid retention. Thankfully things are working better since the hospital, but there is no easy fix and these flare ups could happen more and more. I am going to see my gastroenterologist in Charlotte at the beginning of June so I am praying and hoping he has suggestions on how to best maintain things and keep them from getting even worse. I am retaining a lot of fluid which is very uncomfortable. I’ve been on medicine for that but it is not working as well as we would like it to. I have spasticity from CP and that makes my muscles tight and now that is worse because of. the fluid. All that together makes walking and moving extremely difficult for me and when I do move I require lots of help due the muscle issues and being weak. I have gained so much weight from the fluid and also cannot wear a lot of my clothes anymore. But like my doctors and parents remind me, this is out of my control and I’m doing the best I can.
Unfortunately there are no easy fixes for any of it, and it has been terminal before and unless a miracle happens it will be terminal again. We just don’t know how soon. It could be weeks, months, or years, but that is for God to decide. No matter what doctors say, God is the decision maker and I will not leave earth before it is my time. Life can change in the blink of an eye which makes me desire and pray for those who do not know Jesus as their Savior and Lord. It hurts my heart to think of all the good people in this world who will not go to Heaven when they pass away.
So much joy is missed if you don’t know the Lord. The more suffering I experience I can’t imagine going through these same trials without God. Without God I think I would have given up long ago and become bitter. Thankfully though, God has carried me through everything.
On to a more cheerful note, if you know me well then you know that I have a deep love for music. For every season I’ve gone through I have at least two songs that represent life during that time. When I hear a song where the lyrics could have been taken from my journal, I immediately thank God for that glimmer of hope. Not to sound sappy, but God truly does know the way to my heart. It may be just another simple song to some, but to me it is the encouragement God is giving me that day.
Lately, my music of choice has been Joey and Rory, MercyMe, and Ellie Holcomb. However, mainly I play Joey and Rory’s and Ellie’s albums over and over along with MercyMe’s latest single, “Even If” (thanks to one of my dearest friends Casey Rumswinkel for first introducing me to that song and to Sara for gifting Ellie’s album to me. These sweet girlfriends of mine know me well).
A few months ago Casey texted me a link to it and said “You need to listen to this.” For whatever reason I did not listen then, but a few days later I remembered and listened. The message hit me in the deepest area of my heart. Similarly during that same time, I heard the song “You Love Me Best” by Ellie and oh my word it made me cry all kinds of tears.
God knows me in the deepest of ways and He does love me best. Nothing can lift one out of the pit better than God showing them evidence that He truly sees them. What a gift it is to be known in that way.
Another one of my favorite tunes right now is by Joey and Rory from their “Hymns That are Important to Us” album. This is the song that inspired the blogpost for today. When recording the album Joey was battling cancer that took her life soon after the album was released. Her dream before dying was to complete the Hymns album, and every song on it is beautiful. One song in particular that has become a favorite is called “In the Time that you Gave Me.” This has become one of my theme songs for this season, and for life in general. The meaning of this song has taken me to another level of appreciation considering my circumstances. The lyrics talk about the hope of living and loving life in the time we are given on earth. Its simple and realistic message reminds us to live for the Lord now, and make the most of each day He gives us. We are not promised tomorrow so that is why it is important to love Jesus and live well now. No one is perfect but if we strive to live for Him, God will use us and be glorified.
For me that is my only goal and desire — to love Jesus above all else and to serve Him well in the time He gives me.
I will leave you with one of my favorite lines from the song. Also, click the videos below to hear the songs that have been mentioned here.