Lyme Update 13: *On Yellow Brick Road With The Wicked Witch*
We were in DC last week for appointment with Lyme doctor. The Pope being in town caused roadblocks and much excitement. Perfect weather, I could tell from the hotel window. The appointment was originally scheduled as phone update. I’m so frustrated, the doctor needed to see and hear. I contemplated not having treatment. If I could die from treatment, they needed more skin in the game. Staffers taking days to return calls or giving different answers. Most of the frustration comes from not starting treatment. I left with several prescriptions, one a Morphine patch. Finally she understood how much pain I’m in. We left with a surgery date and what to expect the next 9-12 months.
I’m scheduled for surgery 10/25/15 to implant the catheter which is part of IV Infusion Therapy. The catheter goes in your arm or upper chest, to the heart and comes out in upper chest. Twice a day for 9-12 months, a sterile process of preparing medicine takes place with every Infusion. We are waiting to hear if RN will prepare infusion or I have to do. I will have a RN once a week to change bandage on port in chest.
The trip to doctor in DC last week was difficult with a cane. I’ll have to take wheelchair soon. I’ll go to DC once a month, it will not take long to break my body down.
There is a war going on in my body, we’ll see how IV Therapy attacks the monsters within. A battle is taking place in my brain.
The cost of is always on my mind. We’ve made sacrifices for years to live comfortable in retirement. I feel tremendous quilt. The doctor estimates five-years to get well/well as get. Not only does it change our daily life with the treatments, we may not have money to get us thru retirement. I’ve made the decision to stop therapy when the money concerns reach a certain level.
Next month is busy. I pray some good news comes my way.