Several weeks ago I had surgery to correct a problem with my VP shunt. A small handful of days before surgery my hospice company had been working on my recertification; that is getting everything in place for me to receive another 6 months of care. I was very anxious about surgery, but confident in knowing when I came home I would be in the good care of my hospice team. They have been so supportive and able to meet my needs no matter the hour.
Two days before surgery I got some very surprising news. My care team had collaborated, and they believed I have more like a year or two to live, rather than a number of months. On the day of my surgery, hospice would be pulling out of the picture and I would be transferring to palliative care, another aspect of comfort care.
At first we celebrated what that meant. The doctors seeing my condition stabilize and giving me a greater expectation of life was something to worship over! We had been seeking out some more natural ways of healing, and with the help of some friends also going before the Courts of Heaven to take ownership over healing for myself. This news seemed to be a nod that God in fact wasn’t done with me yet, and we had much to celebrate.
I am trusting God’s plan, but the transition has not been easy. When I came home from the hospital after surgery there was no one to come check in on me at home, and no one we could call at any hour if we needed more support. When my pain rises to unbearable levels we have to wait on a doctor appointment to address it instead of having immediate intervention from home. When I’m dry-heaving for hours on end and unable to keep my medicines down, we are on our own to fight through until relief is found. Instead of a phone call or home visit every week from one doctor who manages everything, I’m finding my schedule filling up with appointments I have to get to in order to see each doctor that handles each problem individually. That alone is exhausting.
I am dealing with infection from one of my incisions from my recent shunt surgery. Unfortunately because of where it is there is a risk of the infection traveling to my brain. It has taken many days and a slew of phone calls and my need to start IV antibiotics has still remained unresolved. These were the things that were easy when we had the hospice team at our fingertips.
While we celebrate that no more hospice means the anticipation of more days with my tribe, and perhaps even a complete healing of my body if that’s what God wihu, it has also been a bit of a challenge to adjust to. I did not magically feel better when I was given this news; instead I have continued to fight hard daily battles, only without the support I had grown comfortable with. I have had to fight harder with less support, and my capacity to do so taps out so quickly. It has meant long stretches with no relief from pain Sleepless night upon sleepless night. Indescribable fatigue having to make phone call after phone call to set things up or to get myself out in my wheelchair to see doctors in person.
I pray this will settle down; that we will eventually find a rhythm in which my needs are met and we can go longer stretches between doctor visits. I pray my focus can remain on living my days well and embracing the moments that will last. Right now I feel like there’s not enough left of me for my family at the end of the day, and I hate that feeling. I know God has a plan in this. Will you please pray that members of my palliative care team will rise up to take some of the burden from us? That I will find rest and restoration at home, and be able to extend myself further to my family?
I’m thankful for you, dear reader, and the support and encouragement you have graciously continued to extend to me. Please tell me how I can pray for and support you as well!
10 thoughts on “Hope and Healing?”
Stay strong 💪🏻 you are doing amazing xx
Dear Lord, thank you for the wonderful gift of more time for Hannah 💕 Please continue to provide every detail, especially with her palliative care team…give them your wisdom and enable them to provide consolidated and timely care for Hannah and Help them to ease Her pain. Do what only you can do Lord! May Hannah feel your loving care and presence daily…please fill her with your peace and strengthen her…restore her health and give her rest. In Jesus name, Amen 🙏🏻
You my friend are in my prayers always! Thank you for your honesty and for letting us know how we can pray for you and your family!
From our nations capital, continued prayers for a complete healing. Blessings, Mark
Oh dear! While out of hospice seems like a blessing, it surely has made your life harder in many ways. My daughter fights this battle also of having to go out to dr’s appts, which is exhausting for all of us. And having to deal with each issue one at a time, with conflicting answers from specialists. I wish there was a better way for both of you. Sending good thoughts.
I am praying, for comfort, healing, and peace, for you and wisdom for your Doctors. 🙏
That is so needed; thank you very much.
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Praying for you
You don’t know me but I’ve been a lurker after looking for information on neurodegenerative disorders. My aunt recently passed from CJD and in the beginning even the doctors weren’t sure what is was, so we were all trying to find something that fit while awaiting her diagnosis.
Its so strange that something so wonderful as being told you have more time can come with the pain of not having the care you need. I look forward to reading your blogs because your writing is full of love and strength even at your lowest. I keep you in my thoughts and hope you can find care that keeps you comfortable and lets you enjoy your family as long as you can.
Jessica, thank you so much for your comment, and for being here for my story. I’m very sorry for the loss of your aunt. I know how hard it is when no one seems to know what is causing the problem. I wish you and your family gentle comfort and sweet memories as you grieve her absence.