dating your doctor: are they “the ONE”?

Finding your “soul mate” doctor is remarkably similar to dating. I mean it! The end goal is to find someone that you can trust with a very vulnerable part of yourself, to believe that what they say is genuinely how they feel and is also true. Let’s explore some of the similarities:

  1. The first date is always awkward: “What should I wear?” On a date, you second-guess “Does this make me look bloated?”. When visiting your new doctor, you wonder “Do I look good enough that my new doctor will think I care about this appointment, but not so good that I look healthy?” … Second-guessing. Back and forth. It’s normal. Whether you’re going on a date, or visiting a new doctor, it’s awkward. When you finally get to the restaurant / doctor’s office, you try to share helpful things about yourself, all the while checking out if they’re a compatible fit and if they’ve got the credentials you’re looking for. The end is also important. “Was there a spark?” If not, there’s no second date.
  2. Good dates require planning: In a dating relationship, whoever asks for the date should choose a time, and come up with a flexible plan for dinner and entertainment. In our doctor scenario, since you’re asking for the appointment, it’s your responsibility to come with a game plan – 1) being ready with your medical history and health journal, and 2) having questions / goals in mind, so you can make the most out of your appointment. This shows that you’re invested.
  3. A gentleman always pays: Well unfortunately, your doctor will never pay… But oh boy, you will! Sorry, I guess this is one where the metaphor deviates.
  4. You may be motivated to start exercising again: Unlike dating where you may start exercising in order to be more attractive to your date… Exercising when you’re “dating” your doctor is more about peer pressure and guilt… Though I suppose it is “good peer-pressure”.
  5. Communication is key: If you leave out essential details, if you’re not paying attention to the most important parts of what is happening in your body… your doctor can’t learn enough information to truly help you. Keep thinking of things you want to share, and listen attentively as they share their thoughts.
  6. Your date can’t read your mind: As much as we would wish, the person you’re dating can’t read your mind. If you want something from your date, it’s up to you to tell them. The same goes for your doctor. If you’re upset, if you feel confused, if you feel like they’re not on the same page as you… you gotta tell them.
  7. You’re not always going to like what your date has to say: If you’re dating a guy / girl with real integrity, their honesty may sometimes hurt. But, would you really want someone who lets you have a booger hanging out of your nose all night? Likewise, your doctor will tell you things that you’re doing incorrectly. As long as it is honest, reasonable advice… let’s just agree that we can be thankful for people who are willing to be honest.
  8. They dream about the future with you: Okay, it would be creepy if your doctor “dreamed” about your shared future… But, they should be actively planning how to get you better – and not just actively – but “thoughtfully”. They should reasonably consider your treatment plan, and it should be a medical plan that both of you are excited about and feel confident in.
  9. You can be yourself with them: You should be able to speak plainly with your doctor without worrying that they think you’re crazy. If you can’t be honest with your doctor about your goals and your grievances, then that’s not a good sign. Now is the time to decide if the problem is with you or if it’s with them.
  10. They help you be the best “you” possible: Good relationships make the people in them bloom into a better version of themselves – more loving, more kind, joyful… At some point in the relationship, you have to decide if your doctor is ultimately helping you become better. Now, you may be more sick than when you started, but do you feel confident nonetheless that your doctor is helping you?
  11. The breakup stage: After giving it some serious thought, if you can’t be honest with your doctor, if you don’t feel heard, or simply if you no longer feel confident that they’re helping your health journey, then it’s time for a break-up.
  12. There are “plenty of fish in the sea” stage: Seriously, google it… So many fish (doctors). You can read reviews of doctors online. You can ask your friends and loved ones. You can ask other Lymies near you! But don’t give up. Fight on. Start over again… You’ll find “The ONE”.
  13. You found “The One!”: Congratulations! You’ve found the doctor whom you can be yourself with, who communicates with you and you with them, who listens to you, who thoughtfully considers your future. May you have a happy and healthy life together! (P.S. I’m throwing imaginary confetti at you!)

So, as you can see… lots of similarities. I wish you lots of hope and favor as you look for “The One.”

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treatment part 4: intravenous antibiotics and picc lines

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My dear friends, at some point your doctor may tell you that they are considering putting you on intravenous (IV) antibiotics—fluid antibiotics that are administered directly into your blood stream. Generally, this is because the Lyme and co-infection bacteria are raging too much in your body, and IV antibiotic treatment would put up a greater fight than simple oral antibiotics. IV meds work better because they immediately enter your blood stream—none of that pesky filtering-through-several-organs-first business. It’s more intense. It’s more costly. And it will be a very different season of treatment. I am so sorry if you ever find yourself in need of “more serious” treatment.03

If it is decided that you need IV antibiotics, you will probably need a PICC line—a peripherally inserted central catheter. It’s a gadget that is placed in your upper arm in an out-patient minor surgery. The PICC line is inserted into your arm and a wire carefully fed through a vein that allows the medicine easy access to your heart. It’s pretty cool (and a little gross if you’re squeamish like me). The PICC line makes it possible for YOU to give yourself IV antibiotics at home. Before this invention, you would have had to go to the hospital every day. The fact that you can infuse at home is amazing!

Now, I’m not going to lie. I had a pretty rough experience. I only received IV antibiotics for 3 months (much less than we planned). My first PICC line agitated my heart (which you’ll read about below), so I had a new one placed the following week. Over the course of those next 3 months, I had several allergic reactions, two staph infections, and my body went into septic shock. I had the one-in-a-million experience. Seriously, one-in-a-million. And I am just fine, and I can smile and remember lots of good things from that season…. So believe me when I say, it’s going to be okay. Even with all that, I ended up a little “better” than when I started. Just imagine how much good can be done when things actually go right!

While my experience probably feels discouraging, it wasn’t all bad news. Here are some great things you can look forward to:

  1. You should have much better die-off with IV meds, which means you should regain some quality of life during and after the IV treatment. Huzzah!
  2. You will finally look as sick as you feel, which as we all know is a strange sort of blessing when you have an “invisible disease”.
  3. You can let it be a wake-up call to summon “fight” that you didn’t know you had. You can come out a better advocate for yourself and more determined to fight!
  4. You will probably reach your out-of-pocket max with your insurance company, so you could have many months of free health care if you time this right! Bring on the expensive (free) meds!

Now, there are a lot of logistics to getting set-up with a PICC line and your IV meds. Your doctor will have a plan in place, and they can explain a lot of this to you. But for now, I want to share with you the kinds of things I would tell a friend who was preparing for this type of treatment… And we are friends, after all, aren’t we?

  • First, your Lyme specialist will refer you to a surgeon who will insert the PICC line. You’ll begin by having a consultation with the surgeon—you can ask them questions and then schedule a date for the insertion.
  • Next, your Lyme specialist will recommend a pharmacy who can handle the mixing and delivery of your IV supplies (they deliver to your door!). They will connect with your insurance company, the surgeon, and even set-up a home-health service who will send nurses weekly to check on you, clean and change the dressing around your PICC line, and draw blood for lab work. It’s amazing how much of the logistics are done for you—cue sigh of relief!
  • Before the surgery, I’d suggest doing a few things for yourself:
    1. Mentally prepare: You will be more wiped out than normal once you start IV meds. You need to prepare yourself and your loved ones for an even slower lifestyle. More rest. Less responsibilities (maybe none). What responsibilities can you shed?
    2. Practically prepare: Before you get the line, I would prepare a bunch of freezer meals (soups, enchiladas, chicken, and casseroles). You won’t feel like cooking, and you won’t be moving much during the infusions. You could also ask people to help you with this. Maybe fiends could prepare 1-2 freezer meals for you per week, so you have an extra buffer.
    3. Emotionally prepare: This will be a time to really fight for your health. You will likely have many phone calls a day between your doctors, nurses, and insurance. It’s awful and you won’t feel like doing it, but you have to keep fighting. This is what I was talking about when I said that you could learn to “fight” in a way that you didn’t know was in you. It’s awesome to determine yourself after this. It’s an investment in your future, and in your family’s future. I viewed “learning to fight” as an act of worship. I felt like Jesus had asked me to be vigilant in taking care of my body, so I wanted to lean in with all of my heart and be obedient. It continues to feel like worship to keep fighting when I don’t feel like it—trusting that He will give me favor as I talk with people, and the strength to do it.PICC-line-elbow_tcm9-45582
  • Okay, you’re all set for the PICC line. The insertion of the PICC line is actually pretty quick. They numb your arm with lidocaine, but some people need more than others. If you’re in any pain whatsoever, ask them to give you more. The only thing you should feel is pressure.
  • Once the PICC is in, you will get your first dose of IV meds at the clinic/hospital to make sure you won’t have an allergic reaction. They’ll bring you juice cups and crackers, while you ice your arm for a bit. Bring a book or movie on your iPad. You’ll be there for a couple of hours.
  • The PICC line itself should feel comfortable in your body. You’ll have some soreness where they inserted it, sure… Even some bruising at the insertion point. That’s normal. However, if you get home and are having lots of chest pain, you should call the surgeon. Nothing scary is happening. The line might be just a little too close to your heart, and your heart is letting you know. Your surgeon can take an x-ray and change the position of the line if needed.
  • Your arm will be bruised and painful for the first week, but then it should feel pretty normal. Most patients primarily complain of itching. Itching at the insertion site is normal and not preventable (I still have phantom itching a year later).
  • Your home health nurse will visit either the day of your surgery or the next day. They’ll teach you how to set up all of your equipment, how to infuse, etc. It feels a bit intimidating at first, but it’s totally doable, and if you are anything like me… You start to feel pretty cool knowing how to do all of this new stuff. As I said briefly, your home health nurse will take weekly blood work, and every 3-4 weeks, they will also run cultures. All of this is to make sure your liver and kidneys are handling the medicine, as well as to make sure that there is no sign of an infection in the line. They will send the results on to your Lyme Specialist so that they can adjust your medicines as needed. It’s awesome how everyone coordinates during this time.
  • The equipment that’s part of the infusion stuff has a dial on it which lets you regulate how quickly the meds are delivered to your body. My experience is that the dial is often wrong… It infuses too fast. So, take note of how long it takes to infuse the first time, and then experiment with the dial to make sure you find the right time (even though it will look like the wrong time).
  • Infusions take a long time, often several hours. You won’t be able to move much during this time (otherwise, the medicine won’t keep infusing). Find some good TV shows, magazines, and books that can help fill your time while you wait. I occasionally had friends come sit with me… But rarely. I was too exhausted to smile and talk during infusions. If you’d like some suggestions on what to do while you wait, check out my post: 14 ways to enjoy resting.
  • Lyme patients tend to develop allergies the longer they are sick. I learned during my PICC experience that I’m allergic to certain kinds of tape and the dressing that they use to cover the insertion site. Most companies do offer more specialized dressings for people who are more sensitive. If you are having crazy itching on your skin, ask your nurse or the company supplying your antibiotics to give you different dressing types.
  • IV-standIt is likely that any time you are having a first dose of a new antibiotic, your doctor will want you to be under the supervision of a doctor (like at an infusion center) so that they can monitor you for an allergic reaction. If your Lyme doctor isn’t local, it might be a challenge for you to find an infusion center where your doctor “has privileges”. It could be complicated, but it might not be. Your doctor will help you navigate through that. If you have a family doctor who has privileges in your local hospital, ask if they would be willing to help coordinate those “first-dose” infusions.
  • Sometimes allergic reactions can happen several doses into a medication. Your doctor should prescribe you an EPI pen, but I would also buy some Benadryl to keep on hand. Because IV meds enter your blood stream quicker than oral antibiotics, if you are allergic to a medication, it’s much more serious in IV form—hence the need for an EPI pen and Benadryl.
  • Invest in Saran Wrap and medical tape to keep your PICC safe during showers. Oddly enough, I found that it works better than the shower covers specifically marketed for PICC lines.
  • Get some every-day PICC line covers! Cut up athletic socks make excellent PICC covers. You can also buy them at Fresh Squeezed LymeAid — a shop run by a fellow Lyme Patient. PICC covers help the insertion site feel secure, as well as makes your arm look more normal.
  • Sometimes a bit of blood will be visible in the line. Flush it with saline. If it goes away and doesn’t come back, then it’s totally fine. If you are consistently having blood showing in the clear part of the line, I’d call your doctor or nurse about it.
  • Your line can get infected. You’ll want to take extra care not to get the bandaged area wet. You also should make sure you feel comfortable with how your nurse cleans it. Don’t shy away from protecting your line. I had TWO staph infections (which is very rare by the way)… I wish I had advocated more my thoughts about my nurse’s cleanings. You will know your line is infected if you have puss coming out of your line. Gross, huh? Your weekly lab work will also confirm the infection, and of course, you can (and should) always call your doctor if you are concerned. The good news is that it’s hard to miss an infection… So you should be just fine!
  • This will cost a lot if you do it. You will most likely hit your insurance policy’s out-of-pocket max this year, and it’s going to happen quickly. A lot of this, you will likely pay upfront (like your IV meds), and then be reimbursed for later. Here are some creative suggestions for how you could handle the in-between time:
    1. Ask the hospital / nursing agency / doctors office if they have financial assistance programs OR an option to do a monthly payment plan. In the past, we have been able to get a large percentage off by showing proof of our financial status.
    2. You could ask about the possibility of getting a discount on a procedure if you pay upfront. Many health organizations lose money as people neglect payment, so they are often willing to give discounts for people who pay at the time of service. We received a 20% discount by paying for my surgery this way.
    3. You could take a small loan from family or friends (if they are able). This could be a great blessing for you, and they will feel happy to get to partner with you during this difficult time. All the same, I’d plan to pay it off as quickly as possible. You want to honor your loved ones for coming to the rescue.
    4. And finally, if possible, plan to get your PICC line at the beginning of a year, so that you have as much free health care as possible once you’ve hit your deductible and out-of-pocket max. It will be extremely helpful to feel the freedom to get as much medicine and see as many doctors as you want… because it’s all free!
  • Keep a spreadsheet of all the medical expenses (including meds) that you are incurring. Then, compare it to your insurance documents as they come in. I was able to catch multiple mistakes where hundreds of dollars were owed to us. Super helpful! Because you will rack up so many expenses quickly, it can be difficult for your insurance to keep up. Stay on top of it, and then make as many calls as you have to to make sure that everything is correct. You have a one-year window from the time of service to make sure that claims are filed. Even once they are filed, they can take months and months to be finalized. This is one of the areas where you’ve got to fight to get stuff done. No one will fight for you harder than you… So get ready!
  • And the most important: Please, please, please… Don’t be afraid to call your doctor and your nurses. You will herx more than normal, you will have strange side effects (like air hunger), and they are there to help you out. Having a PICC line is a big deal, and your doctor knows this. It’s much more serious than using oral antibiotics. My doctor has never been more vigilant than when I had the PICC line. They are there for you. Take advantage of all of it. You don’t need to go through any of this by yourself.

These are just some of the things I wish I had known at the beginning. Your doctor and nurses will walk you through a lot of the practical stuff, so don’t worry too much about remembering all of this… However, it’s here if you ever need it!

This will be a time to bear down and brace yourself, but it can be good. There’s something amazing about going through a tough time and coming out determined and stronger. I have many of those people in my life… Inspiring people who let tough circumstances change them into something beautiful. I want to do that!

Let’s grow together. Let’s keep fighting.

“in sickness and in health”: marriage and chronic illness

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When Kevin and I met in June of 2010, I had only been symptomatic for a few weeks. He has never known me as a healthy person. He has witnessed me growing more and more sick, and he has been with me every step of the way.

At first, he attentively listened and encouraged me as I recounted my stories of doctors visits and medical decisions. Then, I started including him in my doctors visits, where he would take notes for me and help me remember to ask the questions I wanted answers to. Then, he became my sounding board, and we started making medical decisions together. Even as an engaged couple, he helped me pay for my medicine and doctor’s bills.

Kevin knew what he was getting into when he vowed to care for me in sickness and in health. It wasn’t just a possibility that he would someday care for me in sickness, it was his present reality. It was his future.

We’ve been married now a little over two years, and while we are still kiddos compared to the many wonderful, married champs around us… I know that our marriage is very rich. We’ve practiced this vow every day of our marriage, and it has made us tender-hearted towards each other.

Today I want to talk about some of the things that have made our marriage rich, as we’ve both learned to live out this vow. But before I get into specific tips, I want you to know the point of view I’m starting with — I believe the best starting place for marriage when you’re chronically ill is the attitude / posture that your spouse is your hero.

There aren’t really words to describe the trauma of being sick day after day. There isn’t an adjective strong enough for how awful sickness is. It robs you of life. Awful, awful, awful. You can’t escape it. You’re stuck with it. BUT REMEMBER, your spouse willingly takes it on. This is why they are heroes. They choose to bear the load of finances. They stroke your head and massage your arms when you’re crying in pain. They develop sign language and looks to read your every need. They jump to get you water and pills when you wince. They leave the party early every time with you. They use their vacation time for doctor’s appointments, surgeries, and ER visits. They don’t have this illness, but they say “yes” to living with the trauma of it too. They are the person that runs into the burning building on purpose. It’s amazing. They are amazing.

Starting each day remembering all of your spouse’s “amazingness” creates an atmosphere of gratitude, generosity, love, and mushiness. Kevin and I are the mushiest of them all. But seriously, one of the things that makes Kevin and my marriage very sweet is that because I am constantly noticing the way he cares for me, I respond with gratitude and by serving him back.

Now that we have our super awesome, grateful marriage foundation, we can build on that with my 10 practical “in sickness and in health” marriage tips:

  1. Include your spouse in medical decisions. Personally, I’m a fan of making all medical decisions together. Kevin likes to defer to me, as it is my body… But I always want to listen to him and make a decision together. I value his thoughts just as much as my own. The decision greatly affects him too. I want to feel like we’re a team on this—that’s what marriage is supposed to be like anyway!
  2. Include your spouse in your medical appointments. I like to ask Kevin which appointments he wants to go to, and then make it work for his schedule. He’s not always able to go, but he appreciates that I want him there. I always send him a calendar notification, so that he knows when they’re coming up. It helps us both to feel like we’re on the same page—that he is included, and that I’m not alone in this.
  3. Let your spouse help you with things that stress you. Kevin’s favorite thing is when I ask him to call a medical company that is giving me a hard time. He loves stepping in to protect me. We both end up happy. When you’re sick, stress is like poison. Handing off things to your spouse (if they are able to take it on) helps you feel less crazy, and it helps them feel like they are involved. It’s deeply satisfying for both people.
  4. Expand your support system beyond your spouse. If you and your spouse alone are bearing the weight of your disease, you both will be crushed. It’s asking for trouble. There’s no way that your spouse can be your emotional and physical support at all times, and if they try… They will be run ragged. It’s a quick recipe for disappointment, failure, and frankly bitterness. Kevin and I check in regularly reminding each other to meet with people who refresh us and that we can be our real, raw selves with. This also ensures that when we need help, we have lots of people to call!
  5. Maintain your compassion for the tough stuff they are going through. When work is hard, when they have a cold… They need you to listen, be interested, and care for what is difficult for them. Maintaining your compassion is you practicing the “in sickness” vow too. It’s us caring for them in every circumstance. Remembering this makes your spouse feel special and heard, which in turn makes them love you more, which makes you love them more (you get it—lots of mushy love and affection).
  6. Communicate regularly that just because your health is poor doesn’t mean you want your spouse to stop sharing their feelings when they are hurt or angry. It’s so easy when your spouse loves you dearly for them to put their own feelings “on the back-burner” when your life is tough. It’s up to you to keep validating that their feelings and opinions are always important to you. It will be tough at first for your spouse to bring up certain topics when you’re in pain, but it will be so good for your marriage if you keep working through stuff even when it’s hard. It’s logical, right? — that any relationship where one person bottles down their feelings over and over again isn’t healthy. Yes, this is what you’re fighting against. PS: there are definitely times when Kevin and I do stop a conversation until I’m feeling a bit better, but we always make sure to come back to our paused conversations!
  7. Look for ways to serve them back for all of the wonderful ways they are caring for you. Kevin never expects me to, but I like to make our dinner and do some chores each day (well, when I can…). I know I don’t have to. I know that more than anything he wants me to relax and have fun… But I like serving him. I like making his life easier. He cares for me in so many ways, and I want to care for him back. He knows how much it “costs” me physically, and he’s over-the-moon thankful for it. AND it starts our serving / gratitude cycle all over again. What fun!
  8. Remember that you vowed to care for your spouse when they are healthy, not just when they are sick. It can be tempting to minimize caring for your spouse “in health” as less important than caring for them “in sickness”, but your vow went I promise… to care for you in sickness AND in health. Your spouse will be caring for you extra because of your sickness, sure… But don’t let it stop you from being generous in caring for them as they are healthy. Your care for them will look different. You won’t be able to care for them with as many physical actions (doing errands, yard work, cooking, etc), but you can still care for them by listening attentively when they speak, taking the time to ask questions and learn details about their work, friendships, etc. You can defer to them on date night by going to the restaurant they want to go to, or simply by watching the TV show that they love and you only tolerate. The more generous you both are to each other, the more joyful your marriage will be.
  9. Remember that while your spouse acts as your care-taker, their first role is to be your spouse. This health-journey, though it feels consuming, is only one part of your lives. Your marriage relationship is more important (and satisfying) than your care-taker relationship. Don’t forget what marriage is actually about — helping each other become the best version of yourselves, the person that you are meant to become.
  10. And finally… make time for fun with your spouse. In the midst of so many difficult moments, it can be easy to get stuck in all of the “goo”, but you need to have fun. You need to laugh. Go have dates! Invite friends over for a game night. Plan for a date immediately following a doctors appointment, so you have something to look forward to. Don’t let sickness consume your life. Go have fun!

This is just a start, dear friends. I’ve got lots of thoughts about marriage and sickness. It’s one of my favorite topics! The last two years have been the hardest years of my life (and Kevin’s too), but they have been the sweetest, richest, and most tender years. We’ve learned so much through necessity, and we have experienced great comfort in the midst of it.

My sweet hubby will soon be writing a post directly to your spouses, so stay tuned!

14 ways to enjoy resting

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My lymie friends, adjusting to a slower lifestyle can be frustrating. I went from a high-energy and highly-productive lifestyle… to a low-energy and not-so-productive lifestyle. At first, I couldn’t get over the disappointment. With a few years under my belt, I’ve truly learned to enjoy my time resting by discovering new passions and hobbies that fit my new life. I thought you might enjoy some suggestions, so here are my favorite things to do:

  1. Going on a relaxing adventure! Yes, you! Go see new, cool things, and keep the pace slow. Check out a museum you’ve never gone to, take a long-drive out in the country at sunset, get a massage, or go to a movie in the middle of the day! So many choices… I opt for “adventures” where I can easily sit and control my temperature.
  2. Watching Netflix, Hulu, and Amazon Prime for my movie and TV show needs. The best thing about these options is that you can’t run out of things to watch. Here are some of my favorite movies and TV shows:
    • Comedy: Parks & Recreation, Friends, Speechless, Chuck, Secret Life of Walter Mitty, Zootopia
    • Drama: Sherlock, Elementary, The Crown, Blue Bloods, The West Wing, Suits, House, Downton Abbey, Endeavour
    • Inspirational: Hundred Foot Journey, Behind the Mask, Warrior (2011), Frost / Nixon, Spy Game, Extremely Loud and Incredibly Close, Woman in Gold
    • Reality TV: Master Chef, The Great British Baking Show, The World’s Most Extraordinary Homes, Grand Designs, Stay Here
    • Classics: High Society, Harvey, Thin Man (Series), How to Steal a Million, How to Marry a Millionaire, Charade
    • Sweet: North & South, Cinderella (2015), The Guernsey Literary Book Club, Little Women (2017), Pete’s Dragon (2016), Young Victoria, Sense and Sensibility (2008)
    • Musicals: The Greatest Showman, Aladdin (2019), The Muppets (2011)
  3. Taking an Epsom salt bath. I love that I can do something good for my body, and all it requires is for me to get into a relaxing bath. Kayli for the win!
  4. Inviting a friend over to be a “couch buddy”. It can seem awkward to invite someone over when you’re not feeling well, but there are people who would be happy to come over and just sit with you. I have literally made the invitation to friends, “Do you want to come over to watch a movie and not talk?” We agree that I’m not up for talking, and it’s ok!
  5. Doing a simple, repetitive craft — It keeps your hands busy and your brain free from thinking too hard. If you make a lot of them, you could always give them to friends as “thinking of you” gifts.
  6. Remember all of those crafts you just made? You could open an etsy store to sell them!
  7. Finding a new low-impact hobby. Between all of the pills and phone calls to your insurance company, you need to have some FUN. Try a bunch of things you’ve never had time for in the past — I found out that I love baking! I also like writing, DIY projects, trying scones from every coffee/bakery shop in town, and napping. Napping is my favorite.
  8. Stretching. Yep, your body will thank you for taking the time to stretch. To get a solid stretch in can help a  ½ hour go by quickly. If you put on your favorite music playlist, time goes even faster. Go for it!
  9. Texting / Calling / E-mailing friends that I’m thinking about them. They’ll love it, and you’ll feel closer to them even though you’re apart.
  10. Reading (if your brain can handle it) or listening to an audio book is always a great pastime. Here are some suggestions via myawesome, smart and fun cousin, Alyssa, and a few from me too:
    • Auto-biography — Mark Twain’s Autobiography
    • Fantasy — The Way of Kings, The Lord of the Rings
    • Sci-Fi — Ender’s Game, Out of the Silent Planet
    • Thriller — The Dresden Files
    • Classic — Jane Eyre, To Kill a Mockingbird, Les Miserables
    • Christian Fiction — The Screwtape Letters, Black (Ted Dekker)
    • Christian Growth — Embracing Grace, Fight Back with Joy, Enjoying Your Journey with God
    • Children’s Books — The Little Prince
  11. Inviting people to bring a brown bag lunch to my house so we can catch up (that way I don’t have to cook, but I still get company).
  12. Playing games on my tablet / phone — I like two dots, sudoku, posit science, and fit brains.
  13. Writing down my thoughts about life, even if it seems depressing. It helps with processing. It helps you to be honest with yourself, so that you can be honest with others. Often, my writing comes out as prayers, and it’s neat to be able to look back over the years and see how God met my deep grief with comfort and help.
  14. Taking stock of all I have to be grateful for. Spending time remembering (and perhaps writing down) the things you’re thankful for reminds you that your life still has a lot of sweet moments. That may sound cheesy, but actually it’s a really powerful thing to look beyond the pain of the current moment.

Hope this gives you some ideas to make resting fun. Comment below if you want to share your favorite “passing the time” activity!

9 ways to de-stress your life

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My dear friends, stress drives normal people crazy, but to a Lymie, it is like poison. If you haven’t already discovered this, you will likely soon discover that your symptoms get much worse in times of stress, even “good” stress. To me, unnecessary stress is basically sabotage. Now, I know it’s not realistic to cut stress completely out of your life, but I’ve learned that I naturally accumulate stress that I can actually let go of. Here are some prompts to get you thinking about how you can de-stress your life:

  1. Taking stock of major responsibilities. Every couple of months, I sit down to think about the major activities in my life — my job, positions I’ve said “yes” to, etc. I ask myself, “Is this still a good fit for what I can do?” and “Is it sabotaging my treatment?” Basically… am I under so much stress that this is cancelling out any good that my body might be trying to produce? If the answer is “This doesn’t work anymore,” then I talk with my husband or my mentor about how I can let go of my commitment or make it work better for me. It’s amazing how many things can be solved with a bit of creativity. Over the years, I’ve both let go of major responsibilities, as well as figured out how to make them work for me. Every time, I am so relieved! Making time to do this regularly will save you from beating your head against the wall trying to do something that isn’t a good fit.
  2. Taking stock of minor daily activities. About once a week, I stop to think about my upcoming plans. It’s so easy to view everything that I’m planning to do as a “need”. But, in all reality, there isn’t a lot that I HAVE to do. So, I separate things into what I really HAVE to do and what would be awesome if I can get up the strength to do. Some of the “wants” will be important to you – your niece’s ballet recital, a friend’s wedding, going to your church’s Christmas play… This is where I ask myself, “Am I willing to pay the price later?” (Because everything we do as Lymies comes at the price of our bodies). If the answer is “yes”, then by all means go! Go and be fully present in that moment, and then come home for an Epsom salt bath. If the answer is “no, I’m not willing to pay for this”, then I let it go. I chalk it up to, “That would’ve been great, but it’s a not a good fit this time”.
  3. Adjusting your expectations. I don’t know about you, but I tend to have a list of 20 things I want to get done in a day. For a long time, I was constantly disappointed with how unproductive I was. My Lymie mentor told me that her expectation is that she can do one thing daily. Sometimes, her one thing is to take a shower. Sometimes, it is to make dinner. I eventually adapted her attitude, and I’m much happier now that I have realistic expectations. Rather than “rest” being my enemy, because I HAVE to do it… “rest” is now my “norm”. It’s the thing I GET to do, and have enjoyed learning to do. I have learned to be okay with less, and excited when I get to do more. Try it!
  4. Being smart about your weaknesses. Part of what is difficult about Lyme is the way that the symptoms slowly come on. There’s not an exact moment when you start getting “foggy”. It happens over time… It rolls in slowly like… fog (imagine that!). That means it’s easy to live in denial about certain things, or at least it was for me! Here are some of the things I do in order to be smart about my weaknesses:
    • I keep a thorough calendar and a to-do list, because I definitely won’t remember later if I don’t write it down.
    • I cook in large quantities, because I don’t know if I’ll be up for cooking tomorrow. I either eat off the leftovers throughout the rest of the week or even freeze it for later.
    • I RSVP to events as a “maybe”, because even though I want to be a “yes” in my heart… I know that there is a BIG chance I won’t be able to make it. It saves me from feeling like people are counting on me.
    • I plan “rest” days after major events where my only goal is to rest. I literally put “Rest” on my calendar. It saves me from making commitments I can’t keep.nrm_1406241076-cos-01-never-freak-out
  5. Giving yourself the grace to say “no” or to cancel. It’s hard to cancel plans, especially if you’ve had to cancel more than once on a friend. The truth is that normal people cancel when they’re sick. You wouldn’t want a friend with pneumonia to feel like they have to keep your lunch date, right? You’d want them to go home and rest… Give yourself the grace to be sick too. You have to cancel more often, but it’s because you are sick always.
  6. Avoiding spending ALL of your energy on people who drain you. This is a fun one! You have little energy, so the time that you actually get to spend with people is precious. I suggest spending that time with people who refresh you! You know who I mean — those people in your life who leave you smiling and feeling encouraged when you leave their company. Spend time with those people! I’m not suggesting that you cut out anyone who doesn’t fit this description. I know you have people in your life that you care deeply about, and they are going through some rough times. By all means, still be there to love on them. BUT – all of your energy shouldn’t be going towards them. You need to be refreshed too!
  7. Asking others for help! Am I sounding like a broken record yet? I talk about “asking for help” in at least ½ of my blog posts. That’s because you need people! It’s hard to ask for help… Sometimes it’s because we don’t now what we need. Sometimes we’re fearful to be a nuisance. And other times, it’s simply that it smacks up against our pride. But, dear friends, let’s not give in to that. Your loved ones want to help you, and it could make your life a lot easier! So ask for help! I regularly stop to think of what is stressing me out most in life, and then I ask other people to deal with it for me. Why do you think I’m so cheerful? I’ve handed off a lot of things to my friends, and in the process have lost stress and gained encouragement! Kayli for the win!
  8. Making time for fun. You need to have fun. I mean it. Go have fun! It’s so easy in the midst of a hectic life to forget to have fun. I think that adventures, laughter, and new memories fill up our “hope tanks”. It helps us to remember that there’s more to life than the hard stuff. Proverbs 17:22 says, “A cheerful heart is good medicine, but a crushed spirit dries up the bones.” Having fun is like good medicine… and the good news is, unlike your antibiotics, it’s free and is always helpful!
  9. Worshipping. The best way I know to de-stress is to worship Jesus. Have you seen those people who spin plates on sticks, keeping them up in air without letting the plates break? Life feels like that to me; we try to keep all of the plates in our lives spinning. I think a lot of stress stems from that. One of the best things about being a Christian is that God promises to take care of us. He promises to spin the plates, which means I don’t have to! When I take time out of my day to worship Jesus — to thank Him for who He is, for His promises, and for the way that He has and is taking care of me… I feel encouraged, because I remember that I don’t have to fend for myself. Jesus is taking care of me, and it fills me with hope by putting the focus on His provision, not on what is falling apart in my life. Here is one of my favorite passages describing what life in Jesus is like: Psalm 16: 5-11.

My dear friends, learning to let go of the way our lives used to be take time and practice. There will be many opportunities along the way to “give up” essentially — deciding to stop fighting for “being sick well”… But, if you can keep on fighting, if you can keep on learning… Your life can still be very rich. It will be hard, but it will be a satisfying and inspiring life.

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“God, how should I think about healing?”

FullSizeRender (15)The subject of “Healing” is a bit tricky for a Christian with an illness. On one hand, we believe that Jesus did miracles and commended us to ask for Him to do miracles today, and yet there are still so many sick people. What do we do with that? Is it because we lack faith? How long are we supposed to keep asking for healing when someone is sick year after year?

Dear friends, I have thought about these questions a lot. In fact, I’ve spent more time praying “God, how should I think about healing?” than actually asking God to heal me. I feel like I’ve wrestled with these questions, all the while believing Jesus can do it. I’ve come to a real peace about my time being chronically ill as a Christian, and I want to share that process with you today.

Here are the two stories / Scripture passages that have stood out to me – the ones I believe Jesus has given me to know how to navigate this tough question: “God, how should I think about Healing?”

  • (2 Corinthians 12) Paul was pretty much the most awesome Christian ever. He had an amazing conversion story, was healed from blindness and protected from a poisonous snake bite, became a missionary, was beaten and imprisoned for his faith, started and encouraged numerous churches, wrote most of the books in the New Testament, and He LOVED God. In his letter to the Corinthians, he described how there was a “thorn in his flesh” that he asked God to take away. Theologians believe this “thorn” was some kind of chronic illness. God essentially said “no.” Paul asked a second time. God said “no.” Paul asked a third time. And this was God’s response: “My grace is sufficient for you, for my power is made perfect in your weakness. Paul continued to explain to the Corinthians, “Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” (2 Corinthians 2:9-10).  My dear friends, if healing were a matter of faith alone, Paul would’ve been healed. But God explained to Paul that He could show Himself mightier in his life if Paul were weak. And through all of this, Paul discovered the secret of being content – letting Jesus be His source of life, no matter the circumstances.

I get this. I understand it in a deeply personal way. Before I was sick, I wasn’t aware that I needed God’s help daily. Consequently, there wasn’t a lot of freedom in my life, because I didn’t depend upon Him. As I’ve been sick, He’s met me with incredible grace, and I have countless stories where I have been undeniably weak from my sickness, and yet I felt God strengthen me to do something impossible. There’s no way that the good I have experienced in this last season came from my own efforts – because I haven’t had the strength! Which means, that the grace and provision I’ve experienced have all been God showing up for me in His full strength and love. I see that God’s grace is sufficient for me, that He shows up powerfully in my life as I make room for Him. I have become content because I know with all my heart that God is with me.

I’m not saying that God won’t heal me, or that I’ve stopped asking. But, I do feel specifically like God has spoken to me through this passage. I feel like it’s okay for me to not keep asking. It isn’t a lack of faith or a lack of not asking that is the result of my not being healed. Healing isn’t a formula, and we don’t understand all of the “why’s”… but I feel that God is telling me to rest in His grace, and that He will be my strength and provision. So, that’s what I’m going to do! (And turns out I love it!)

  • (Daniel 3) Shadrach, Meshach, and Abednego were three young Hebrew guys back in the day of the Babylonian reign. King Nebuchadnezzar had set up an idol that all of the citizens were required to worship, but these young men wouldn’t comply. They were brought before King Nebuchadnezzar and given the choice to bow down to the idol or to be thrown into a fiery furnace. Their response was simple: “If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and He will deliver us from your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up” (Daniel 3:17-18). King Nebuchadnezzar did indeed throw them into the fiery furnace (after heating it up 7x hotter than normal). When he looked into the furnace, he saw four men walking around unscathed – the three young men and an angel. King Nebuchadnezzar shouted for them to come out, and they didn’t even smell like smoke! King Nebuchadnezzar then knew that the God of Shadrach, Meshach, and Abednego was the true God, for no other god could save like Him!

I love this story. This isn’t your typical healing passage, but it shows us something significant about how we can respond to God. The phrase “[my] God is able to deliver [me] from it, but even if he doesn’t…” is a lasting phrase ringing in my ears. This posture / attitude resonates with me. I believe with every fiber of my being that God can heal me, and He does heal people. I know that my God is able to deliver me from Lyme Disease, but even if He doesn’t… He is still a good God, and I will worship Him. I feel a strong conviction that my focus shouldn’t be on being delivered from Lyme Disease. My eyes are fixed on the One who delivers.

I would love to be healed, dear friends. I mean that. I don’t say that lightly. Lyme Disease has ravaged my body and my life. I want for it to be gone! But even more than I want for my Lyme Disease to be gone… I want for Jesus to meet me. I want for Him to convince me that I’m loved even when I do nothing to earn it. I want for Him to convince me that He will be with me in my hardest moments of life. And He has. These are the things He keeps proving to me, over and over again. It is the thing that I treasure most in my life. And while healing would be wonderful, it pales in comparison to finding out that my God sees me and loves me exactly where I am.

My dear friends, these are my convictions about being chronically ill. I’ve prayed. I’ve asked God to show me how I’m supposed to think about this time, and these are the things that resonate deeply in my heart. These may resonate with you, but don’t take my word for it. I’d encourage you to ask God how He wants you to posture your heart. Do you feel like God is asking you to contend for healing? Do you feel like He is asking you to love Him and trust Him no matter what? Do you feel like He’s telling you to rest in His grace and let Him do all the work? What passages of Scripture stand out to you?

It is likely that well-meaning people who love you will offer you thoughts about healing that don’t quite resonate with how you feel. That’s okay. My advice would be to talk with a trusted friend or mentor to see if they think there’s anything you should take a second look at. Pray about it too. But don’t get too worked up. If you’ve asked your mentor, and you’ve asked Jesus but ultimately feel like “That’s not for me.” Then, fantastic!  Let it be like water off a duck’s back…

This is about you hearing freshly from God what you are to pay attention to. I find that God speaks to me most through reading my Bible — things stand out to me that never have before, and it sticks with me. The Bible is always a great place to start in knowing how to navigate life. Jesus’ character is displayed throughout every page. Because He is the same yesterday, today, and forever… His words and His ways back then are still relevant for you now.

Ask Him how to posture yourself during this season. His words to you will settle your heart and give you a landing place.

treatment part 3: herxing

Right now, even as I’m typing, my body is herxing. Every part of my face, scalp, and ears are burning… and It’s working its way down. I’m lightheaded, and the room is tilting back and forth. I would categorize this as a minor herx.

This isn’t a “type of treatment” kind of post. This is a “what to expect during treatment” kind of post. Essentially, here’s what happens: during the course of different treatments, you will have periods of intense Lyme and co-infection bacteria die-off. It will happen so rapidly that your body can’t filter out the dead bacteria quickly enough… resulting in an intense burst of symptoms. This process of quick die-off and intensified symptoms is referred to as herxing.

Herxing is your frenemy. Have you heard that term? “Frenemy” is a funny term for “best friend” and “enemy”… It’s wonderful to have die-off, because it means that your current treatment is working (friend… yay!). However, you feel even worse than your normal level of awful (enemy…boo!). This is one of the few times in your life, that you should be happy when you feel bad… Lean into the “friendship” feeling.

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Herxing can bring out the “crazy” purple minion inside all of us. My best advice is to remember that herxing is a good thing. Ride it out. Keep your sense of humor.

For me, I’ve had many forms of herxing. By that, I mean that the duration, intensity, and what kinds of symptoms have varied. Here’s what I have noticed:

  • How I know: I know that I’m herxing because it’s like a rush of symptoms, much more than normal. It’s like those work-out bikes where you can select a random workout, and it’ll jump in one second from a level 1 intensity to a 6. That’s what herxing is like for me. It happens like a snap.
  • Kinds of symptoms: The symptoms associated with your herxes won’t always be the same. It seems to me that where the Lyme and co-infections have the strongest hold in your body directly correlates with what symptoms you’ll have while herxing. For instance, my lab tests show that Bartonella (a co-infection) is raging in my body currently. Bartonella is known for causing heart irregularities and problems in your brain. Not surprisingly, when I herx right now, my heart flutters, my blood pressure drops, and I have a lot of pain in my head. Not too long ago, Babesia was the co-infection rearing its ugly head, so I had herxes more related to Babesia symptoms. Make sense?
  • db6d464fcee21800440b5c90ea0fc446Intensity: My herxes have also ranged in intensity. With the minor herxes, I can still have a normal-ish conversation and people not know that I feel especially awful. With my most severe herx, I experienced intense air hunger (meaning I couldn’t breathe) and a host of other things. My doctor promptly sent me to the emergency room. If you’re ever uncomfortable with how much your’re herxing, you should definitely call your doctor / get yourself over to the ER.
  • How long: My herxes have lasted between 15 minutes and several days. It’s not a set formula. Don’t get too worked up about how long they last. It’s just good that it happens. Ride it out.
  • How to handle it: When I’m herxing, the best thing I can do is to rest. Don’t push it. Lean into the good die-off of bacteria. I eat especially healthy food, drink lots of water, eat salty foods (so that I retain the water I’m drinking), and cozy up on the couch with a movie(s).
  • P.S. (For my fellow female Lymies) Herxing tends to be elevated around the time of your monthly cycle. Oy vey… Just a heads up!

I highly recommend recording in your medical journal when you feel like you might be herxing, what symptoms you have, and how long it lasted. Talk to your doctor about all of it when you see them next. The goal for your treatment is to have tolerable herxing.

The full history and science behind herxing is fascinating. If you want to read more, check out Chronic Recovery Illness’s article.

Happy Herxing!

books to read / things to watch

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My dear friends, I have just a few resources in mind that might be helpful for you in your Lyme journey. I tend to be overwhelmed if I have too many resources to read. I hope that narrowing it down to my favorites can be a help to you. Ready?

Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders — Quite the title, huh? As you might guess, this book is meant to be a resource for everything you need to know about Lyme. It covers the history of Lyme Disease, the infections that ticks spread, the signs and symptoms of Lyme, how to get diagnosed, treatment options, and how to protect yourself and your family.

Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and its Coinfections — Another lengthy title… but a great book. Stephen Harrod Buhner suggests powerful herbal supplements and medicines that can be used in combination with antibiotics or alone as a possible treatment option.

 

Under Our Skin — This is a documentary that has been incredibly useful in spreading Lyme awareness. It specifically highlights where the medical and scientific community has been lacking in research and diagnosis. This documentary is free online and has a sequel that you can buy on DVD.

Fight Back with Joy — After reading those books and watching that documentary, you might need an emotional stabilizer. Margaret Feinberg wrote this book after receiving a cancer diagnosis, and it chronicles her time in treatment. It’s not a book about cancer. It’s a book about learning to fight, learning to rest, accepting and asking for help, and finding ways to insert joy. Truth moment – I was already crying about 5 pages in because the things she started to describe were all too familiar. I loved the book.

I hope these can be good resources for you!

rethinking your limits

I had been sick for about 9 months (undiagnosed) when I was invited to attend a Ladies’ Retreat that my college was throwing. It was an especially cold winter in Illinois, and we would be staying in cabins. I’m not the kind of person who is excited at camping, even in cabins, so my disposition was already set against it. But the real icing on the cake was that I had severe pain and cramping when exposed to cold temperatures (my first symptom). Nothing in me wanted to go.

I was involved in a few places of leadership at my school, and they were trying to get some people like me to go, who would be cheerful and create a happy atmosphere. I claimed that part of my hesitation was the cost, and they offered to pay my way to go. Ultimately, I felt guilty and decided “well, maybe I’ll be ok. Jesus will take care of me”.

I went. It was not a good idea. The room where we met for our sessions was not heated, not insulated, and had a concrete floor. Everyone else was wearing their bulky winter gear, gloves, and stocking hats, and seemed to be cold but okay. You would have had to wrap me in a cocoon of six down-comforters for me to be ok in that room. My choice was clear. Essentially, I could either go to the sessions and be writhing in pain, or I could stay in the cabin, which was slightly heated, and be alone.

I used to be stubborn when it came to boundaries and limits with my health, so of course I went to the sessions and lasted until tears were streaming down my face. I sat in the back so no one could see, and then would quietly excuse myself. I did this three times a day for three days. I wish I could tell you that I got smarter after this mess of an idea, but it took me about three more years before I finally decided to totally accept my circumstances, adapt to them, and be ok with it.

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A “yellow flag” is used in football to mark a penalty… It means you’re not playing the game right

I didn’t know how contented I would eventually be living within my limits. It’s actually quite wonderful. You become more intentional about your choices. You stop giving lots of your energy to less important things. It’s hard, absolutely. You give up your old way of life. You give things up that you dearly love. You have to make choices of whether it’s more important that you be able to cook dinner or take a shower (because you won’t have enough energy for both). As Margaret Feinberg says in her book, “Fighting Back with Joy”, your life suddenly becomes about “or’s” rather than “and’s”. You won’t be able to do this AND that AND that other thing. You’ll have to choose this OR that OR the other thing. It’s frustrating and seems impossible when they all seem important. But, there is a way to slow down. It’s not natural, and it may require adjusting expectations, creativity or getting a lot of help from loved ones, but there is a way to slow down. And when we do, life is much better. When we stop beating our heads against the wall trying to do what we previously had done when we were healthy, we can finally rest and perhaps heal a little.

I fought this for years. I would have little “yellow flags” in my heart that “this isn’t a good idea”… But I would be compelled by love, or worse by guilt or by fear that people wouldn’t understand when I stop showing up. Perhaps people didn’t always understand these things, but I no longer make decisions because of guilt.

There is something freeing and beautiful about doing what you can do, and nothing more. My Lymie mentor gave me a great metaphor. It’s like you’re a person who comes to market to sell your peaches. People come by and purchase them throughout the day, but when they’re gone, they’re gone. That’s when you go home. People might still want to buy your peaches, but they have to come back the next day… BECAUSE THE PEACHES ARE GONE. You can’t buy a peach if there is no peach there. When we live this way: doing all that we can do, but nothing more…. We’re living with integrity. We’re living within our limits.

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It’s strange, but being weaker can enlarge your life. It can make sweet moments richer; it can make you more grateful for the little things. I’m a Christian, and for someone who believes in Jesus, it can be rocking to have life circumstances get hard. It can bring up a lot of questions. My experience is that God has met me over and over again in an extremely personal way since I’ve been sick. I had a lot of head knowledge about God when I was healthy, but I didn’t rely on Him. When I was suddenly very weak, I got to experience His rescue on a daily basis. I knew I wasn’t strong enough, so when I had moments of strength, I knew it was His grace. And when I couldn’t stop crying, but I felt comfort… I knew it was Him. And when the little I could offer someone was exactly what they needed, I knew He could use the little I have to make a big impact.

Do you remember what I said earlier about going to that retreat? I had decided before I went: “Maybe it’ll be ok. Jesus will take care of me.” As I went back to my cabin each time, I would lay on the floor and cry. I would shake because I was crying so hard. I’m not going to lie… In my head, when I said, “Jesus will take care of me”, I meant that I expected Jesus to let me attend the sessions and participate fully in the retreat. This obviously didn’t happen. But I did experience comfort in those really deep moments where I felt most alone, where I felt separated from my friends, where I felt like no one understands or sees me. It was still a sad experience, but I felt great comfort… And eventually I was ok. Jesus did take care of me, and looking back, I think He took care of me in a deeper way than I expected… Because I felt His presence when I was feeling most alone.

I’ve learned over the years that my motivation for going beyond my limits is often based in fear, and I find that in those times, Jesus doesn’t automatically give me the strength to fight through. I think He has wanted me to experience the grace to rest, the grace to know that the plates will keep spinning if I’m not spinning them, that my friends will understand and forgive me when I cancel last minute, and that I’m loved even when I do nothing. Now, I still feel His grace when I fight my limits, but it’s even better when I give myself a permission slip to take a break. When I fight my limits, I come home saying to Him, “Darn, I did it again. I fought when I didn’t need to. I saw the ‘yellow flag’ but kept going. I want to be wiser!” I didn’t know deep grace in my life until I decided to rest in my circumstances, to stop fighting them. And I wouldn’t trade it for anything.

It takes some time to figure out what the limits are, and you may overextend yourself multiple times like me, but it will be okay. There’s grace for that too. I thought that fighting to keep up with my healthy self meant that I was strong, but I’ve learned that I’m strongest when I’m wise with my body. True strength is doing what you can do, and letting go of the rest.

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treatment part 2: supplements

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My dear Lymie friend,

Part of the disappointment of any medical treatment is the possibility that not only will this treatment not help, but that it also might hurt (i.e. antibiotics having bad side-effects). There are, however, things that you can try in Lyme treatment that can only help. Today, I want to talk with you about vitamin, mineral, and a few herbal supplements.

Because Lyme compromises your immune system, you are also likely to develop deficiencies. You may need to consume extra of many vitamins, minerals, and herbs to get what you really need. Your doctor can run blood tests to see where you have deficiencies. In a later post, I’ll talk about getting some of these nutrients from your food intake, but getting all the nutrients you need from food takes time and practice. In the meantime, you may want to start with pills. Some of the common supplements your doctor may ask you to start taking are:

Vitamin C – it’s a powerful antioxidant that helps protect sells from invaders. Sounds useful, huh? It supports overall immune system health. It is likely your doctor will want you to take several thousand milligrams of Vitamin C daily.

Iron – It’s very common to become iron deficient when you have Lyme. Iron helps your body make oxygen-carrying red blood cells. Without healthy red blood cells, your body can’t get enough oxygen, which hurts your chances of getting better.

Vitamin B Complex – Vitamin B is responsible for turning your food into usable energy, and that’s only the beginning. It also supports your nervous system, aids in the development of new red blood cells, and more. A vitamin B complex (a supplement carrying all 8 forms of Vitamin B) will help your body turn food into energy. Since Lyme is characterized by intense fatigue, it is no wonder that a Vitamin B deficiency is common.

Vitamin D – Vitamin D is necessary for your body to consume calcium and phosphorus. Not only that, but it also is linked to your immune system, helping you to withstand certain diseases. Yes, this too, is a common deficiency for Lyme patients.

Garlic – Taking garlic supplements (and consuming it fresh in your food) will make your life a lot better. It’s one of those things that has about 50 benefits including: maintaining healthy liver function (very important if you’re on heavy meds), fighting fatigue and stress, and useful in the prevention and treatment of many diseases.

Magnesium Complex – Magnesium is imperative for healthy bones, nerves, and muscles. It also regulates blood sugar, blood pressure, and making proteins. Yes, you definitely need this. On a personal note, I take it daily, but I also take it when I’m having significant pain in my face. My doctor suggested this trick: break open the capsule and put the magnesium powder under your tongue. Put just a bit of water on the magnesium. It will get hot. Hold it in your mouth as long as you can (a minute is good). You should start feeling relief in about 5 minutes. If not, take one more capsule the same way. This trick enables the magnesium to enter your blood stream faster, giving you quick relief.

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Ginger – Ginger is a great supplement to take for nausea. Generally speaking, it helps with a variety of stomach upset. Take it. You will be happier.

Curcumin – Curcumin is a great anti-inflammatory. Not only that, but it is also a great source of antioxidants. Yippy skippy! Another helpful supplement. I take this daily for my swollen, hurting muscles.

Berberine – Berberine is a supplement that is often used to aid the treatment of bacterial infections (Ding! Ding! Ding!), intestinal issues, and inflammation.

Krill Oil – This one smells bad, but don’t be deterred. This supplement gives you your Omega-3 fatty acids. It decreases swelling, lowers cholesterol, and improves heart health. Because heart problems are common with Lyme, it’s specifically useful.

Probiotics – Probiotics are live bacteria and yeasts that are good for you, particularly your digestive system. If you are taking antibiotics, it is especially helpful to take probiotics, so that the good bacteria in your gut that the antibiotics killed will be replaced. They can be found at your local health food store or somewhere like Whole Foods.

Grapefruit Seed Extract – GSE breaks up cysts (Lyme bacteria forms into cysts to protect itself from antibiotics). Breaking up the cysts allows your antibiotics to kill Lyme and co-infection bacteria.

Gamma-Amino Butyric acid – GABA is an essential amino acid that works in your central nervous system. It essentially calms down nervous activity in the brain by inhibiting nerve transmission. In Layman’s terms, sometimes with Lyme the neurotransmitters in your brain are firing too quickly, and GABA helps slow it down to what it should be. GABA is already a naturally occurring substance in your body, but us Lymies sometimes need extra.

Mitochondrial Energy Optimizer – Basically, each cell in your body has mitochondria, which helps produce cellular energy. If mitochondrial function decreases (which can be common with many diseases), organ function can decrease as well. Taking this supplement makes your mitochondria happy again.

Now, I say all of this to be helpful, but obviously… I’m not a medical professional. Don’t start taking these on your own. I’d strongly urge you to ask your doctor about any that interest you, and see what he/she thinks. These have all been recommended to me by my doctor (notice I didn’t tell you the frequency or dosage), but she has the full picture of everything that is going on in my body. She has told me to get them, because they are specifically helpful to MY Lyme and co-infection battle. I would imagine that many of these are helpful across the board. However, your doctor will have the best thoughts about what will help you.

One last thought: not all vitamins and minerals are created equally. Don’t just look for the cheapest option. This is another reason talking to your doctor is helpful. He/She may have a specific brand that they want you to use. What I do is find out which brand, dosage, and frequency my doctor wants me to take. Then, I go on Amazon to see if I can get it at a better price than my local health food store. Since just getting out of bed can be a chore, I’m happy when I can get it shipped to my door for free with Amazon Prime.

There’s a lot more to talk about with treatment options. Stay tuned.