After my current palliative care provider announced that they are dropping me as a patient I embarked on a search to find another group that would manage all the things that they had been for me. After many late night hours searching for providers, several interviews with prospects, countless phone calls, an amazing patient advocate, and a whole lot of rejection, I am left without the care that has carried me through these past few years. Palliative care is changing; they only want cancer patients because the reimbursement is better. They were managing my pain, my mental health, my nausea, and my breathing, and I do not know what or who is going to fill those holes.
Next I got a letter from my physical therapy company stating that they are shutting down at the end of this month. For three years I have had the most compassionate, talented physical therapist coming to the house twice a week to help calm my spastic muscles and loosen contractures through massage, stretching, and myofascial release. It has provided so much pain relief.
Two weeks ago I called to reorder my infusion supplies and had to leave a message. Nobody called me back, so I called them again this week. The voice at the other end of the phone said, “well it looks like it’s been too long since your last order, so we discharged you; you’ll have to ask your doctor for new orders.” The same doctor who will no longer see me.
I do not understand why everything that has been essential to my health is falling apart. We uprooted ourselves from Colorado to come here for better healthcare for me. Now all at once that is crumbling, and I am not sure what the next step is. I do not know if this is God saying He has something else for me, or it is time to stop fighting.
I am weary. I am frustrated, and I am confused. I am exhausted from trying to advocate for myself for all the things. I wrote down a list of each of my doctors, most of them specialists who only manage one particular issue like respiratory or GI. There were fifteen of them. I know for certain I do not have the strength to run around to fifteen different doctors every month to get my needs met.
This feels like standing in the middle of a tightrope where neither end can be seen. Unsure of whether to go backward or inch forward, not knowing what waits at the other side. Fortunately I know where to look; up. No matter how shaky my situation seems, or how far the drop is, I can count on my Heavenly Father to reach down and steady me with His tender assurance. He is the one who sees the bigger picture.
I greatly appreciate your prayers in these days ahead as we try to figure out the next steps. I know God will provide as He sees fit, and I am trying to focus on the quality of my moments with each of the people dear to my heart, and not stress about the rest. Easier said than done.