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Amelia McNeilly

Pink Patriot - My desire is to share with you the journey God has me on. Whether in joy hardship, I hope that my blog offers a place of respite, and bring joy to your heart!

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Articles, Christian Living, Devotionals, Disability, Family, Friendship, The View Looks Fine From Here

Hospice, Hospital beds, Oxygen, and Super Heroes Oh My!

Hospice, Hospital beds, lift chairs, oxygen, and super heroes oh my! I titled my post that because the past few weeks have been crazy with so much happening healthwise.  My once cute room is now filled with multiple medical supplies. I laugh just thinking about what might be brought in next. Haha! When my friend Kristin visited a few weeks ago she brought super hero decorations and decorated my equipment. It was fitting because lately I have needed an extra dose of super hero power in my days. It is hilarious and I love it.

On to other health news, for months many of you have prayed for the Lord to provide a miracle and to allow there to be a cancellation with Dr Kinnelly in Charlotte so I could see him before October. God heard your prayers and he had some last minute cancellations recently, and I was so happy to receive that telephone call. However, the end result was not what we wanted to hear, but I was also not surprised. It is a long story but Dr. K was not respectful of my time or the suffering that I’ve experienced. His bedside manner is not the best but he is brilliant. I was in his office for three hours and by the end was exhausted. Basically he had not reviewed any of my files and had no idea what was going on. At first he tried to say my problems might not be infection related. But when he finally realized the true facts of my condition he said that unfortunately nothing else could be done except for what we were already doing.

The root of my problem is that my bladder cannot fully empty which in turn causes chronic infections. Also, because I have a neurogenic bladder from CP, it continues to get more sluggish over time. Due to the bladder surgeries I have had earlier in life nothing else can be done surgically for this either. Therefore, I will continue to treat these infections until they can’t be treated anymore under the guidance of my infectious disease doctor and hospice. Fast forward a few weeks to now.

The week before last I felt a flare up with my bladder starting. However, because of being on antibiotics continually the test came back with a false reading. The result was negative and I was hoping it would stay away for a while but it didn’t. Days later I ended up in the ER. critically ill with a kidney infection that went sepsis so I spent a few days in the hospital. Had I not went in when I did, I would not have made it through the night. I will forever be thankful for the room full of nurses and doctors frantically working with me trying to get me in stable condition.  Praise Jesus the treatments they gave me has attacked the infection and has worked the best of any medications I have had recently. I came home now and still on some powerful antibiotics which seem to be working. Unfortunately the meds I’m on are making me extremely nauseous. The side effects are brutal and even worse because of how weak I am,  but worth if it keeps the infection under control. I have  also been referred to another ID doctor in Charlotte. I had the opportunity to Skype with him recently and was very impressed. There is no cure for my situation but he seemed hopeful about possible treatments to keep infections down for longer periods of time. My appointment with him is on August 9th so my prayer is that I can hold my own and not have to go to the hospital again before then.

Overall, my prognosis can be discouraging at times, but I am grateful to know the facts and that we are doing everything that can possibly be done to help me.. We are all on the same page with things and I am glad for that. That is what I’ve been praying for. I am a realist and like to know the truth of the matter even if it is not what I want to hear.

If I dwell on my situation too much, it can be scary with so much uncertainty for my future and health. But my hope is in Jesus and no matter what doctors say, or how bad the infection may be, God is greater than all of that. As Amy Carmichael says, “In acceptance lieth peace.” Accepting circumstances is not giving up. It is being content with Jesus wherever He has you. Acceptance brings peace.“[clickToTweet tweet=”Accepting circumstances is not giving up. It is being content with Jesus wherever He has you. Acceptance brings peace.” quote=”Accepting circumstances is not giving up. It is being content with Jesus wherever He has us. Acceptance brings peace.”]” 

God and I have had 32 years together and He has never let me down and has brought me through the fire so many times. This week God keeps bringing Lamentations 3:22-23 to mind. It states, “Because of the Lord’s great love we are not consumed, for his compassions never fail.They are new every morning; great is your faithfulness.” [clickToTweet tweet=”Because of God’s compassion and faithfulness , our suffering does not have to consume us because His love never fails” quote=”Because of God’s compassion and faithfulness , our suffering does not have to consume us because His love never fails”].

In the midst of hard days, God has also provided some amazing encouragement through the people in my life.  In addition to the hospice nurses and therapists, over the past few weeks I have had wonderful company from friends and family from both near and far. Not everyone in what I call my inner circle – lives nearby but my people have shown up and I have the best community of friends a girl could ask for. My favorite part of the last few weeks has been the quality time I’ve spent with friends, especially friends I don’t get to see often because of where they live.  There is nothing sweeter than visiting with best friends and loved ones.  I’m so humbled and blessed by the people God has put in my life over the years and these sweet friends of mine ( you know who you are) have been with me through thick and thin. Thanks to everyone for the visits, calls, notes, gifts, and most importantly thank you for all the prayers. I’m so grateful for the mighty group of prayer warriors who daily lift me up to the Father, and for holding me up when I’m weak. I am forever thankful to each one of you. Your prayers and support  gives me strength to press on, and a reason to hope a little more with each day that comes.. I love you all and hope you are enjoying your summer holiday. My prayer for you this weekend is that you would spend time at the feet of Jesus and find rest for your souls.

 

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Hi friends. Welcome to my website. I have a disability called Cerebral Palsy, but have learned over the years that my CP does not define me. Jesus Christ is my identity, not a disability. Read More…

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Enjoyed spending some time earlier today with my d Enjoyed spending some time earlier today with my dear friend @beckyabernier. So thankful for her friendship and her visit always encourages my soul! #friendship #joyinthelord #goodfriday
Amen! Love this quote from Lottie Moon! Amen! Love this quote from Lottie Moon!
The view looks fine from here. Enjoying sitting ou The view looks fine from here. Enjoying sitting outside for a bit. #thankful #saturdays #happyplace
Been watching royal baby coverage. I just can’t Been watching royal baby coverage. I just can’t help it ha! Welcome to the world the new royal baby! 💙 #royalfamily #british
I am so excited for my dear friends @nataliesosmar I am so excited for my dear friends @nataliesosmart and @jantzenmc on the upcoming birth of their sweet baby girl. Their announcement is below. Congrats! Love yall can cannot wait to meet Jubilee Amelia. I am so honored. Praising God for this joyful season of your life. //
"Name drop for our girl. Also her middle name Amelia comes from our sweet friend @ameliamcneilly who is a Godly friend that faithfully prayed for her. Also we love this sign from Gloriously Restored. #carolinajubilee"
Received this beautiful quilt today made and given Received this beautiful quilt today made and given to me by my sweet friend Joy (@themakingsofjoy). This blessed and encouraged my soul greatly today. Brought tears to my eyes. Thanks again my friend! Love you! Be sure to check out her other quilts and gorgeous designs on Etsy and Instagram. #themakingsofjoy #happymail #encouragement #friendship
Needed this reminder and truth from Scripture toda Needed this reminder and truth from Scripture today!
Lucy loves having our friends Jessie and Zeke visi Lucy loves having our friends Jessie and Zeke visiting this morning, especially Zeke. Ha!
Amen #daringtohopebook Amen #daringtohopebook
Received this call in the mail today from the swee Received this call in the mail today from the sweetest kiddos. I love it and it made my day! So sweet and thoughtful. 💕😍💕
My dear and sweet friend Josie who I met at CIU (w My dear and sweet friend Josie who I met at CIU (walker 1 Girls) came to visit with her daughter Lydia. They are on a road trip from Ohio and I’m grateful they came by for the afternoon. It was good for my soul. #thankful #friendship #encouragement 💕💕💕
I’m not the only one in my happy place. I love m I’m not the only one in my happy place. I love my Sissy girl 💕🐕💕 #happy #dogsofinstgram #sissy
I love my Sissy Girl! 💕🐕 I love my Sissy Girl! 💕🐕
Happy Wednesday! So thankful for this Scripture an Happy Wednesday! So thankful for this Scripture and the anchor I have in Christ no matter what my circumstances are. He is my hope! ⚓️
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