Taking Mepron is a bit like working a construction job. It's hard, it makes me sweat (literally!), and I have to PROCEED WITH CAUTION.
Mepron also reminds me of construction because it's YELLOW. It's called the Yellow Paint Medicine, after all. So how are things going on Mepron? Well, it's a crazy ride of ups and downs, but I'm making progress. Most days I feel worse, as my symptoms have intensified on the treatment. But between herxes, I have had a few days with more energy than I've had in 5 years. That doesn't mean I felt great on those days, but when I went for a mile walk, shopped at Walmart, and then cleaned my room all in one day, it was encouraging! I'm not sure when I'll have another day like that, but it gives me hope! For the past week, I've been feeling much more flu-like again. The hard thing is that when I feel a little better, I have to increase the medicine again, which makes me feel worse initially. Lately, I've had a lot of nausea, sweating, fevers, achiness, and malaise from all the herxing. I'm on 1.5 tsp of Mepron now, and I am increasing weekly. Likely, I'll be on the full dose of 4 tsp in another 5 weeks. Then we'll be adding the next anti-Babesia medicine. There are 3 anti-Babesia medicines besides Mepron that I'll eventually be on, but we have to add them in and increase them slowly. The treatment is intense, so I have to email my doctor weekly and proceed with caution.
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Today I read The Color Psychology of Yellow on the website Verywell. I learned that yellow is "an extrovert's color." I learned that "not everyone responds to this color in the same way." On another site I learned that "Yellow is the color of the sun, smiley faces and sunflowers. It’s a happy, youthful color, full of hope and positivity."
Why did I research yellow? Well, today I took my first dose of Mepron. Patients often call it the "Yellow Paint Medicine" because, well, it looks like yellow paint. It's also called "Liquid Gold" because it's very expensive. Mepron is a medication that targets Babesia. I started with ¼ tsp at breakfast and will take another ¼ tsp at dinner. The goal is to increase the overall dose by ½ tsp every 10 days until I reach 2 tsp 2x a day. The past 3 weeks have been harder, as I've been taking Lumbrokinase, a new supplement that breaks open Babesia biofilms. I've had a lot of fevers, sweats, chills, nausea, diarrhea, and increased fatigue since then. This is because by breaking open the biofilms I'm exposing more Babesia, and my immune system is now able to reach and kill more of the infection. However, even while I've been feeling much worse physically, I've simultaneously had more mental clarity for reading and writing. This is because by dissolving the Babesia biofilms my blood is able to flow better in the small vessels of my brain. Dr. L sometimes calls the biofilms "plugs," because they literally plug up my blood vessels and keep the blood from flowing as it should. I've seen the big, ugly biofilms in my blood smears before, and it certainly makes sense how they restrict blood flow. Yesterday I emailed Dr. L a summary of how I've been feeling, and he suggested I begin the Mepron at a low dose, as I did today. We expect it will make the herxing from breaking open the biofilms and killing Babesia even worse, but it will also get me through the herxing faster. Prayers are much appreciated! My parents and I recently calculated my monthly out-of-pocket medical expenses for medications and supplements. Currently it’s about $2,300 a month, even with GoodRx coupons, a prescription assistant program, and buying supplements when on sale. (Thankfully, my doctor appointments and testing are covered by Samaritan Ministries.) It’s humbling to share these numbers publicly, but I am thankful for everyone who has supported me. My brother Alex is helping create an online store to sell my artwork and cards to offset some of the expense, and I will share more soon! Now I'm off to take another dose of the Yellow Paint Medicine. Let's hope it has a positive effect! "You've come a long way, but you still have a long way to go," Dr. L told me over the phone on Friday. And he was right. Both statements are true. For the first time in 6 years, I went to Walmart a few weeks ago. You'd better believe I was beaming under my mask! I walk 1 mile almost every day and recently completed a 2 mile hike. I was able to attend my brother's wedding on May 8th, although it was a push that left me crashed in bed for 3 days afterwards. I'm living in a season of firsts and am filled with awe and wonder. I'm thankful God has brought me this far. Currently, a good day is when I can be up for about 4-5 hours in the morning mostly doing sedentary activities, rest in bed all afternoon, and walk 1 mile outside after dinner. This is the most I've been able to do in years, but I'm still quite limited. I still have a lot of fatigue, brain fog, and get headaches easily. I have at least low-grade fevers daily and often experience sweats and chills. I have occasional GI upset and sometimes feel like I have the flu. We need to keep fighting the infections. Yesterday Dr. L started me on step 1 of my new treatment for Babesia. It's a supplement to help break apart the Babesia biofilms. Then in a few weeks I'll likely be adding a new medication that attacks Babesia. Eventually, I'll probably be on 5 different antibiotics and herbs. Dr. L has been honest with me. These treatments are going to be very difficult, and I'll worsen before improving. Today I'm already feeling the effects of the new supplement with increased fatigue, fever, and feeling run-down. Every day for the past several years I've kept a daily symptom diary and a log of when I start or stop medications or supplements. Now I'll have to email Dr. L a summary of this every 1-2 weeks so he can judge my response to treatments. I receive routine blood work monthly and test my urine 2x a day. I also have to monitor things like my blood oxygen saturation levels. My grandpap says it's like I run a lab. Maybe someday I will. ;) We don't know how long I'll need Babesia treatments, but I've been told to expect about a year. I'm not exactly looking forward to it, but I also know that while they'll initially make me worse, in the long run, they'll make me better. While this is intense, I am thankful God has placed me in good hands. Dr. L has studied Babesia extensively and emailed me a 6 page document he wrote about the treatments and a PowerPoint presentation. He is knowledgeable and sympathetic as his daughter has Babesia. He responds promptly to my emails, and he is willing to treat me, although I'm a complicated case. He has encouraged me by sharing his daughter's own story and how she has improved greatly on Babesia treatment. Healing is possible, and I am hopeful. Often I listen to This Is Your Fight Song from the Piano Guys. The music invigorates me when I'm weary. It begins with this beautiful verse from Amazing Grace, "Through many dangers, toils, and snares, I have already come. 'Tis grace that brought me safe thus far, And grace will lead me home." Note: There will be no post next week since I am posting today. I will resume my usual posting schedule of every Tuesday on May 25th. "Your mind knows you are going to Songdo. But you must not tell your body. It must think one hill, one valley, one day at a time. In that way, your spirit will not grow weary before you have even begun to walk. One day, one village. That is how you will go, my friend." ~ A Single Shard, Linda Sue Park Today I had a phone consult with Dr. M, my Bartonella specialist. My latest blood smear from March was still positive for Bartonella--overall the smear is much cleaner than previous ones, but I haven’t completely eradicated the Bartonella. However my main infection to target now is Babesia. Dr. M will continue to treat my Bartonella, but Dr. L will be taking charge of treating my Babesia. Dr. L is my hormone specialist, but he is very knowledgeable about Babesia and has been tirelessly developing a much better treatment protocol because his daughter (around my age) also has it. How God works brings me to tears. I became Dr. L’s patient in 2019 because he took his daughter to Dr. M, and Dr. M subsequently referred me to Dr. L for my hormones. I’d never known about Dr. L if it weren’t for his daughter’s illness, and he took me when he wasn’t accepting new patients. Under his hormonal care, I have greatly improved. More recently Dr. L figured out that his daughter also has Babesia. I am again seeing God’s providence because Dr. L was the first to suspect that I have Babesia, and I am now improving on Babesia treatment. My doctors would like me to start on a new Babesia med, but we are waiting until after May 8th. My oldest brother Alex is getting married that day, and I don’t want to miss the wedding! This treatment is going to be very intense, will make me worse before better, and will require a lot of monitoring. So until after the wedding, the plan is to just continue my current antimicrobials. I’m in a bad herx right now (as those of you who read my last update know), but I am slowly improving after lowering the antibiotic dose on Friday. I’m still in bed most of the day, but I was able to spend a few hours outside visiting with my family on Easter. Hopefully, I’ll continue to improve, and then we can bump up the dose again. We’ll probably rotate between two weeks on the higher dose and two weeks on the lower dose for a while. One day at a time. This is how I will journey. I blinked. The ceiling was covered in green smoothie. The walls were covered in green smoothie. The floor was covered in green smoothie. I was covered in green smoothie.
Apparently, I hadn't fully secured the lid onto the blender, and in the process of blending my smoothie, the lid had flown off, spattering splotches of green smoothie everywhere. Uh, oh. Thus began my journey of drinking green smoothies 6 years ago. Hopefully, you'll blend one too after reading their benefits and my recipe. The Benefits of Drinking Green Smoothies Green smoothies up your vegetable intake. I easily consume about 3 cups of vegetables each morning in my smoothie. Green smoothies are "fast food." It only takes about 10 minutes to make a smoothie. It's an easy way to ensure a healthy meal on a busy day or when your energy levels are low. Green smoothies are easy to digest. Since all the vegetables are blended, they are easier on the stomach. For a year in my illness, all I could eat were smoothies and pureed food. Green smoothies are high in fiber. Fiber forms bulk in your colon and helps bind and excrete toxins and inflammatory mediators. Green smoothies can aid in weight loss. The fiber in green smoothies makes them very filling, and they are low in calories. Green smoothies are more economical than juicing. With green smoothies, you're blending the whole vegetable, vs juicing where the fiber is removed. With smoothies, nothing is wasted, and you won't have to buy as much produce. How to Make a Green Smoothie Buy a quality blender. Originally, we bought a NutriBullet, but the motor failed after just a few months. Now we own a VitaMix. It's expensive, but it blends beautifully, is long lasting, and comes with a warranty. Start with a liquid base. I use 2 cups of filtered water for making a smoothie that blends to the 5.5 cup line. You could also use green tea, almond milk, etc. for your base. Use more or less liquid to adjust the thickness of your smoothie. Use plenty of organic vegetables. I use about 3 cups of vegetables, including lettuce, kale, celery, cauliflower, broccoli, zucchini, and carrots. Mix and match vegetables to find what tastes best together. Include nuts, seeds, or peanut butter. These will make your smoothie more filling and give you fat and protein. Use fruit sparingly. Try to limit the amount of fruit in your smoothie and use lower glycemic options like apples and berries. Sugar, even sugar from fruits, feeds yeast and bacteria in the body. I often only use half of an apple in my smoothie. Add ice. Green smoothies are more palatable when they're cooler. I blend 6 ice cubes into my smoothie. And, yes, make sure the lid is secured onto your blender. Need I say more? Now I'm off to drink a green smoothie. Will you join me? “This is like running a marathon,” my specialist said, as I left my appointment for the 5 hour drive back home. And he was right. Traveling with a chronic illness is no small feat. Due to the severity of my illness, I am mostly homebound and rarely leave for anything besides a medical appointment. When I do make a medical trip, it takes much planning in advance and is taxing on my low energy levels. Still here are some tips that make traveling possible. Don't make any major treatment changes before traveling. Because many treatments make me feel worse initially, I avoid making any major changes to my protocol for at least a week before traveling so I am as stable as possible. Don't do all the travel in one day. My parents and I always leave the day before my appointment and sleep overnight so the trip is less exhausting and so we are fresher for the doctor. We then drive home the day of the appointment. Get as comfortable as possible in the car. Often, I’ll sit in the passenger seat opposed to a back seat so I have more leg space and can recline. I wear light colored clothing to stay cooler, use a small pillow for my back, and wear sunglasses to prevent headaches from the direct sunlight. When I was extremely light and sound sensitive, I wore a sleep mask, earplugs, and earmuffs to block out as much light and noise as possible. Pack all necessary medical supplies and assistive devices. I bring all my regular medication and supplements, dose my cortisol medication at higher amounts to cope with the stress of traveling, and pack “emergency remedies”--ginger tea for nausea, TriOral Electrolyte Powder for dehydration, and Alka-Seltzer Gold for herxing. I bring ice packs, as I often run fevers. In the past, I have even packed my own bedding and an air purifier to run in our hotel room, as I was at risk for severe reactions to even the scent of dryer sheets. When I was extremely weak, I used my wheelchair. Plan and cook meals in advance. Both my mom and I have very restrictive diets, there’s no such thing as a “cheat day” for us, and we cannot eat in restaurants. Before any trip, my mom creates a menu, and the day before we leave, she spends hours in the kitchen steaming vegetables, preparing meat, making hard-boiled eggs, cooking gluten-free grains, etc. She then packs the food into dishes labeled for each meal and loads them into a cooler. In the past, she also had to puree my food before packing it due to my severe digestive issues. Bring plenty of water and snacks. I'm always tired, and I try not to add to my fatigue with dehydration or blood sugar crashes. Often, I'll snack on nuts, apples, and raw vegetables. Flying with a chronic illness is more challenging, but it can be done, as my family proved in 2014, when we traveled to the Grand Canyon. At this time, I was still generally healthy and only had to avoid sugar, but my mom was on a very restrictive diet due to her autoimmune illness. Before we left for our trip, we planned a menu for each of the four days we were vacationing and created a list of groceries that accommodated my mom’s diet to buy once we got off our flight. Of course, we needed a way to cook, so we packed my dad's bag with a George Foreman Grill, an electric hotplate, jumper cables, and an inverter so that we could cook off the battery of our rental car. Finally, "go with the flow." On that Grand Canyon trip, airport security made my dad unload his bag, as all his gear looked suspicious, and he had to show his driver's licence a second time. We had to really "go with the flow" when we got off our flight, and Dad realized his driver's licence was still with the TSA agent. How would we get our rental car? How would Dad fly home without his driver's licence, which served as his photo ID?
Ended up we registered the car in Mom's name. Flying home was a bit more tricky. We had been assured by the airport that if Dad just showed his credit cards, they'd let him through security, but you guessed it, that didn't work. Dad was held up at the gate, emptying his wallet and searching for identification with either his address or Social Security number. Just as the TSA agent was telling my family to fly home without him, Dad pulled out an old Red Cross card that had his Social Security number, and he was "saved by the blood!" So there you have my tips. Traveling with a chronic illness is difficult, but it can be accomplished. |
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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