17/01/2024
🚨Super long post alert 🚨
Behind this smile is a 40 year old wife, mama, daughter, sister, aunt…that is facing a Goliath every single day. Knocking on death’s door again and it aint easy pushing through each day.
Blaring at me 24/7 is this body that has forsaken me, barely able to walk across the house with oxygen. Needing to sit with every task. Unable to carry much or do much. Not even able to eat much. This body that I am being told is dying, again. There is no set time, but one of the docs said today, “I honestly didn’t expect you to make it this long” 😳 (ouch-she was being brutally honest and I appreciate it honestly-but wow). Maybe I am in denial and struggling to really accept it. How does one who fights so hard to stay alive for her family deal with this? It is such a defeating feeling. I have been dealing with all this for almost 10 years. Death tries to come and each time I have been able escape it. Only by God’s grace.
I share this not for pity. I have no clue what lies ahead. But, whatever it is, I feel prompted to share the truth of the situation now for what it is. To expose God’s future glory in whatever He chooses to do. Whatever it is must have great purpose. And I trust Him fully.
I am basically considered palliative care now. We don’t do anything anymore at my appointments except check bloodwork to make sure my med levels and kidney and liver functions are normal. They are keeping me on antibiotics to keep the infections in my lungs from growing out of control (they hope). No real chance of curing them from the looks of it, I am told. Nothing else to do, we are at the end of that road, I am told. We do CT scans every so often to see how its going in the lungs. Its always small talk and happy smiles and breathing for the stethscope exam and then do I have any questions.
The big elephant in the room is let’s be honest and quit with the nice, courteous, fluffy rainbows and unicorns. They can’t because when they do, they want to cry. And then we will all cry. So this is what it has come to at my appointments now, and thats ok. I feel like I want to help them cope with it by letting it just be rainbows and unicorns. Its easier that way. They get attached to their patients and they feel like they have to exude positivity or something maybe for a seemingly desperate and sad situation to which they can no longer help with.
But I need them to see my Jesus at work. I talk nonstop about Him and it is rarely reciprocated. I can spot a believer faster than you can say it. They smile and their face lights up so happy. I know, professionalism or whatever 🙄…but when it is Jesus, and you are all in, you can just tell from the face if they know Jesus. The ones who just dont get it are a part of the purpose in all this. Some of them need to see Jesus and I am willing to be bold enough to keep talking about Him when they wont. So I need that to stick with them. The ones who need Him. Long after I am gone I hope they remember not me, but the Jesus that carried this bag of bones around. The one I wouldn’t shut up about.
Honestly, it is so hard to hold on to hope in this spot Im in. Im in between a rock and a hard place. Looming all around is the Goliath of a chronic illness ridden body that meets “severe” way to quickly it seems. I have heard “incurable” more than once. I have heard “rare” more than once. I have heard “youngest, sickest patient”. What a track record I have had. Its like a cat with nine lives, having walked this valley of the shadow of death one too many times. God is certainly capable of working miracles and He has proven that many times for me now.
I am reminded that the little guy, David, in the Bible (David & Goliath), he did what he knew. He brought rocks to a sword fight. He used his slingshot out in the fields as he was tending to sheep. That is what he knew. He even refused that clanky, heavy armor that the soldiers wore. No one else would fight that was trained and capable. Not even the king. So, slingshot and rocks, untrained in battle, along with faith that God would deliver him and the Isrealites. Thats all he had and it was more than enough. Even for a giant with a sword.
What faith it took to walk into that fight and not back down. Not give in to fear of what he saw before him in the physical. Trust God with his life. Just take that stone and wind it up and let go…true obedience in the face of adversity. Boldness. Perseverance. Trust.
Well, that is where I am. Hope is scarce here, but I have Jesus. And, after all my chances to have been dead already, Id say God has done pretty good at defying the odds. Im praying for that yet again. I trust Him. No matter the outcome. But praying for one that lets me love my little family a bit longer still. I have basically been fighting to stay alive since Lucy was born. 💔
So I will keep facing my giant each day and remember that God is bigger. I hear the doctors, and that is my medical reality. But, I will not let fear take me down. I am gonna live one day at a time and obediently listen to whatever God needs me to do. And raise my babies, love on them, help them with homework, give them hugs when they have had a bad day, chat when they want to talk, snuggle up on the couch and watch movies, etc., and of course love on my husband too. 🥰
The doctors have said I need to make sure I am making as many memories as I can at this point. So be cautious about sickness but not as strictly as they have advised in the past. I surely wish I could travel, but being on 6-8 lpm oxygen and depending on a oxygen concentrator battery to be portable (or else be plugged in), makes that difficult. I do have a car plug in for it, so I am good in the car. If anyone has been on that much oxygen and found ways to travel (be away from a power source longer than an hour), please let me know what you did. My portable concentrator only goes up to 5lpm but that seems ok. The battery at 5lpm only lasts about an hour, maybe a little more. And I have an extra battery.
I am also considering connecting with Hospice because they help those who are palliative care, not necessarily terminal with a prognosis. So my Hospice people, advise me on what might be offered or what that process is. If things do start going downhill at some point, I want to already be connected so things are less stressful for everyone at home.
It ain’t pretty walking through this. But I am only able to do it because I have the Lord walking it with me. I fear nothing of death for myself. I know exactly where I will be. My heart aches at the aches the people I love will have. So I am hoping that isn’t anytime soon. But when my day has arrived as God has chosen, I want it to be a peaceful transition and not one of respiratory struggle. I want everyone to know that I plan to fight as long as God allows.
My heart is just a little extra tender today after my appointment. Sorry for being a little too real about hard things. So many emotions floating around in my head and not really sure how to process them all. Just pray for me. 🙏❤️
Edited to add: I have spoken with Hospice of the Piedmont and started that process. I have two gracious people helping me figure out power to my oxygen away from power source. Thanks yall!
Edited to add: CT scan and blood work are back. Blood work looks good. CT scan shows worsening of the rejection, but stable for the infections since my last CT. The Campath is wearing off and that is likely a big part of why the rejection process is worse. I can’t have another dose due to the infections I presently have. Rejection and infections oppose each other. The treatment for rejection can make the infection worse, which could kill me faster. This is the kind of place miracles are birthed, if the Lord so chooses to show out again on my behalf. I know He can, but He is still good no matter what. To God be the glory in all things.
