Hello, family and friends,
I'm popping on my blog with an update. Thank you so much for your continued prayers!
When I last wrote, I was about to make several medication changes/adjustments. Fortunately, I've handled most those well and even noticed mild improvements in how I felt. Unfortunately, I didn't handle one of the antibiotic switches and seem to have developed a drug rash. It got bad enough that I had to stop the new antibiotic and go back on the old one. Thankfully, my rash is much better now.
The next step is to add another antibiotic this Thursday. It is the most potent Babesia antibiotic available, so we expect me to herx and feel much worse initially. I'm also at risk of killing a lot of red blood cells (RBCs) because Babesia is a blood parasite, and when you kill Babesia, you subsequently kill the RBCs it infects. I might kill a lot of healthy RBCs too because if a Babesia infected RBC touches a healthy RBC the healthy RBC becomes abnormal enough that the spleen will remove it. Prayers that I don't become anemic or need a blood transfusion are much appreciated.
Things are still very up and down in how I feel, but I continue to feel improvements between herxes. Those improvements are gradually adding up to bigger milestones, and there was much excitement when I recently had enough energy to go paddle-boating with my mom for one hour straight and to walk 1 mile. Paddle-boating for an hour plus walking a mile is the longest I've been able to sustain exercise that physically demanding for 6 years! It came about when I'd asked my mom to take me for a walk at Twin Lakes Park, and I'd packed money because I was secretly hoping I might feel well enough to rent a boat. The funny thing was that when we got in the car Mom mentioned the possibility herself and said she had money. Then when we got to the boathouse, Mom realized she'd forgotten her purse in the car, and I was the one who had the money and the needed photo ID to rent the boat. You better believe I teased her that I was the responsible adult this time. :)
Now that I've shared that good news, I need to add the context that I was mostly in bed the rest of that paddle-boating day, and I had more fatigue and flu-like herx symptoms afterwards. Exercise makes me feel worse because it dislodges more Babesia into my bloodstream for my body to kill. "Good days" might only last a few hours, but considering that in 2018 - 2019 I used a wheelchair and depended on my family for everything from bringing pureed food to my bedside to washing my hair, well, it's pretty amazing I could paddle-boat.
That's why I was excited to tell Dr. L about my paddle-boating adventure in an email, and he was excited too. I also learned a lesson: When you email your doctor about such a milestone, include a picture of you and your mom in the boat, even if it's a selfie you feel self-conscious about. Don't expect your doctor to settle for just seeing pictures of the lake because he'll ask, "No picture of you and your mom in the boat?" And then you'll have an awkward moment of wondering what to reply because you can't say you forgot to attach the picture. In the end, I sent the requested photo along with a joke that I did have further evidence that we were really in a paddle-boat, and he replied, "Very good--NOW I believe you! ;-)" Haha.
I haven't had another day like the paddle-boating day, and now that I'm about to ramp up on treatment I will likely feel much worse. But we're encouraged, and we know that the treatment is working. Thank you for your continued prayers and support over the last 6 years.
Love in Christ,
Lauren
I'm popping on my blog with an update. Thank you so much for your continued prayers!
When I last wrote, I was about to make several medication changes/adjustments. Fortunately, I've handled most those well and even noticed mild improvements in how I felt. Unfortunately, I didn't handle one of the antibiotic switches and seem to have developed a drug rash. It got bad enough that I had to stop the new antibiotic and go back on the old one. Thankfully, my rash is much better now.
The next step is to add another antibiotic this Thursday. It is the most potent Babesia antibiotic available, so we expect me to herx and feel much worse initially. I'm also at risk of killing a lot of red blood cells (RBCs) because Babesia is a blood parasite, and when you kill Babesia, you subsequently kill the RBCs it infects. I might kill a lot of healthy RBCs too because if a Babesia infected RBC touches a healthy RBC the healthy RBC becomes abnormal enough that the spleen will remove it. Prayers that I don't become anemic or need a blood transfusion are much appreciated.
Things are still very up and down in how I feel, but I continue to feel improvements between herxes. Those improvements are gradually adding up to bigger milestones, and there was much excitement when I recently had enough energy to go paddle-boating with my mom for one hour straight and to walk 1 mile. Paddle-boating for an hour plus walking a mile is the longest I've been able to sustain exercise that physically demanding for 6 years! It came about when I'd asked my mom to take me for a walk at Twin Lakes Park, and I'd packed money because I was secretly hoping I might feel well enough to rent a boat. The funny thing was that when we got in the car Mom mentioned the possibility herself and said she had money. Then when we got to the boathouse, Mom realized she'd forgotten her purse in the car, and I was the one who had the money and the needed photo ID to rent the boat. You better believe I teased her that I was the responsible adult this time. :)
Now that I've shared that good news, I need to add the context that I was mostly in bed the rest of that paddle-boating day, and I had more fatigue and flu-like herx symptoms afterwards. Exercise makes me feel worse because it dislodges more Babesia into my bloodstream for my body to kill. "Good days" might only last a few hours, but considering that in 2018 - 2019 I used a wheelchair and depended on my family for everything from bringing pureed food to my bedside to washing my hair, well, it's pretty amazing I could paddle-boat.
That's why I was excited to tell Dr. L about my paddle-boating adventure in an email, and he was excited too. I also learned a lesson: When you email your doctor about such a milestone, include a picture of you and your mom in the boat, even if it's a selfie you feel self-conscious about. Don't expect your doctor to settle for just seeing pictures of the lake because he'll ask, "No picture of you and your mom in the boat?" And then you'll have an awkward moment of wondering what to reply because you can't say you forgot to attach the picture. In the end, I sent the requested photo along with a joke that I did have further evidence that we were really in a paddle-boat, and he replied, "Very good--NOW I believe you! ;-)" Haha.
I haven't had another day like the paddle-boating day, and now that I'm about to ramp up on treatment I will likely feel much worse. But we're encouraged, and we know that the treatment is working. Thank you for your continued prayers and support over the last 6 years.
Love in Christ,
Lauren
