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
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Do you like board games, storytelling from a picture, guessing from a clue, and deceiving people? Hehe, on the final question, but it is part of the game. You do? Well, Dixit is the perfect game to suit your fancy. If you’ve never heard of it, you’re in for a real treat. I like Dixit because it only takes about 30 minutes to play, is suitable for 3-6 players, and is recommended for ages 8+. I love Dixit because of the creativity and storytelling it inspires. Here’s a brief synopsis of the game from the manufacturer, “The players have hands of oversized cards with various artistic pictures. The active player secretly selects one of his cards and gives a very brief description. The other players secretly select their own cards which match the description. The chosen cards are shuffled and revealed, then players vote on which was chosen by the active player. Each correct answer gives points to the guesser and the active player. Each incorrect answer gives points to the player who submitted the guessed card. However, if all of the guesses are correct -- or none of them are -- then the active player gets no points and all the other players get points. The game ends when the deck is empty. The greatest total wins the game.”
In other words, Dixit is a game of storytelling from a picture on a card. Either you’re the player telling the story or you’re amongst the players choosing your most deceiving card that matches the story and then taking a guess at which picture is correct. Sounds fun? Play a round with me sometime or buy your own copy on Amazon. Well, friends, the rubber hit the road on Wednesday and Thursday of last week. My parents and I were in the car for a roundtrip total of 11 hours as we made my medical trip to see Dr. L in North Eastern PA. Praise God for safe travels!
I had a thorough appointment with Dr. L that lasted 90 minutes. Obviously, we discussed a lot during that long appointment, but the summary is that we are making several medication changes. Currently, I'm decreasing my thyroid medications, and in the coming weeks, I'll be switching out 2 of my antibiotics for stronger ones. I'm staying on Mepron, the Yellow Paint Medicine, and I'm on the full dose now! I also need a baseline EKG before I start one of the new antibiotics due to possible drug interactions. Please pray for strength for me as the treatment is about to greatly intensify, and we expect it to cause a lot of herxing and to make me feel much worse initially. The treatment is extremely difficult, but between herxes, I do feel improvements. Honestly, being diagnosed with Babesiosis has been a breakthrough for me. I've been sick for over 6 years, and with the exception of correcting hormonal problems, I've made more progress since we began treating me for Babesia in January of this year than I have with treating anything else. My diagnosis of being infected with Bartonella is still correct, but it seems Babesia has always been the main cause of my illness. Babesia odocoilei, the strain I have, is carried by 20% of deer ticks in PA, and it's the only tickborne illness where the larvae are born infected. I have no known history of a tick bite, but the larvae are tiny and often go unnoticed. I am one of the first diagnosed cases of a human being infected with this particular strain, but Babesia odocoilei is not rare and my doctors expect to see more positive results now that we finally have testing available for it. Dr. M, my doctor in the D.C. area, is the one who invested in the equipment to test for this. We know I'll need treatment against Babesia until I feel well and no longer herx on the anti-babesial antibiotics, but Dr. L told me that he doesn't know how long that will be. Everyone responds differently, and the infection is hard to kill and may be impossible to fully eradicate. However, I am blessed that Dr. L is determined to help me, is constantly researching Babesia, and is going to be teaching other doctors about everything he's learned at a large medical conference in Florida in October. Fortunately, I held up better on this medical trip than I did on all previous ones, but I was pushing myself and crashed afterwards. I'm so thankful for my mom and dad who took me and prepared for being away. Our route home took us through Ricketts Glen State Park, and we were able to stop for 20 minutes and enjoy an easily accessible waterfall. It was so refreshing and beautiful to see. I hope someday I can go back and hike, but first I have a metaphorical mountain to continue climbing. It's an uphill battle, but I'm climbing it one step at a time. |
AuthorHi! I'm Lauren Watt. I'm a 20 year old Christian, chronic illness warrior, and amateur artist and writer. Archives
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