She's been dealing with the reality that her senior year isn't what she envisioned and she feels cheated by Lyme disease. Last night, though, she was able to ride in the high school caravan to the homecoming game and attend part of the game. Her friends put her on a list of students who would be participating so she could be part of the festivities and not have to miss this. Another friend who is on the student council was made aware of this so he could stand up for her if anyone questioned her being on the list. THANK YOU to the sweet friends who made this happen!
Josey also has new glasses ordered since her vision has changed. I went with her to the appointment to answer questions about fluctuating vision and Lyme and to be a support just in case the eye doctor questioned anything. It turns out several people on staff at the optometrist's office know people who have Lyme disease and the doctor's babysitter has Lyme disease. We were able to give them more information about Lyme and were glad to get a positive and encouraging response there.
On September 17, Josey had her second in-person appointment with the LLMD. Some medication changes were made and IV meds were discussed again. Jo's nerve pain meds will be increasing, one antibiotic will be changed while another is doubled in strength. We're also adding artemisinin (an anti-malarial that helps kill co-infections of Lyme diseae), and have a new prescription for Marinol. Marinol is THC in a pill and will hopefully help with nausea and has off-label uses for some of her other symptoms. It is typically prescribed for cancer patients going through chemo and for AIDS patients. We met with the IV charge nurse and with the person who handles the financial end of getting IV treatment. At her return appointment in December we will likely be putting Josey on IV antibiotics and she will have a port. Initially we thought she would have a picc line placed in her arm but were told by the doctor that they want to do the chest port. It would be nice if between now and then the meds make a significant difference and the IV can be avoided. Josey is all for getting it but there are concerns that she doesn't really grasp - like risk of infection, proximity to her heart/lungs which adds to the risk, increased Herx, and having to have the dressings changed by a home health nurse. We're also looking at 4-6 months of IV at a cost of around $30,000 that insurance doesn't cover. The picc line would give me the ability to care for her bandages/dressings but apparently not the chest port. The nurse did ask if I'm squeamish about bandages. Josey and I grinned, looked at each other and said, "Nope." Courtney's wreck changed all that for me! If I can change bandages and care for open wounds, burns, and a bazillion stitches, I've got the picc line stuff covered. So, we'll see what develops between now and December and hope for either no IV or a picc line.