surrounded by truth, surrounded by worship

My dear friends,

One of the frustrating things about sickness is that it’s difficult to know what is true. We are surrounded with many different perspectives and agonizing decisions. It’s easy to get swallowed up in all of the indecision, but I have experienced something that cuts through that — Worship.

For me, worshipping Jesus is like coming up for air when I have been somersaulting in the waves. I have a new, bigger perspective. It reminds me of what is really true in life — who Jesus is, what He has done for me, what He thinks about me. It fills me with peace as I remember my God is constant even in chaotic circumstances. It fills me with hope as I remember the things He has promised to do for me, and the ways He has already been good to me.

Worshipping God can look many ways — singing, playing instruments, dancing, praying, stillness… The point is that we actively let our heart soften before the Lord — wanting to hear Him, wanting to thank Him. It’s a heart posture.

Amidst all of these ways, the Bible does talk a lot about using music. In fact, David says of the Lord, “You are my hiding place; you will protect me from trouble and surround me with songs of deliverance” (Psalm 32:7). I love singing and playing the piano in worship, but my favorite is simply listening… letting the truths of God wash over me, letting the truths of God deliver me from my grief, from my despair, from my own false conclusions… Being surrounded by songs of deliverance

It’s powerful when we surround ourselves in truth, and the more that we do it… the more clear life becomes. Worship is one of the ways that we can be buoyed up in truth..

So today I want to share some of my favorite songs with you. I think they would be meaningful to anyone, but they feel especially intimate to me. So many great words of truth, hope, surrender, comfort, and strength.

I pray great blessing for you as songs of deliverance are sung over you.

Healing Is In Your Hands, Christy Nochels

Refresh Me, Leeland

Be Still, Hillsong Worship

Mountain, Hillsong Worship

Holy Spirit Have Your Way, Leeland

New Wine, Hillsong Worship

Behold (Then Sings My Soul), Hillsong Worship

You Hold Me Now, Hillsong UNITED

Lion and the Lamb, Leeland

Carried to the Table, Leeland

Never Once, Matt Redman

Healer, Kari Jobe

In Your Freedom, Hillsong Live

I Am Not Alone, Kari Jobe

Beautiful Exchange, Hillsong Live

Be Still, Kari Jobe

Dear friends, there’s so much more that I would like to talk with you about worship — it accomplishes profound things. Let’s do that sometime.

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the faith to go, the faith to stay

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In the course of being sick, I am daily confronted with the decision to stay or to go. Go to the party or stay at home. Go to the church service or stay at home. Have that friend over for lunch or cancel. The canceling of plans always feels like a “no”, like a negative thing, whereas “go” feels like a “yes”. Instinctively, one feels good; one feels bad. One feels like a victory, the other a failure.

I think it’s easy as a Christian to start to associate “going” as the faith-option, and “staying” or “resting” as the giving-up-on-faith option… or at least the “lesser-faith” option. It’s easy to think of it as a cop-out. However, both “resting” and “going” are godly principles, and both of those things require faith.

  • We see the instruction to rest throughout the Bible. It’s everywhere. “Be still and know that I’m God” (Psalm 46:10). “Come with me by yourselves to a quiet place and get some rest” (Mark 6:31b). God even gave the Israelites instruction to rest for ¼ of the year. That’s right. When you add up the Sabbaths, the feasts and Holy Days… The Israelites rested for ¼ of the year.
  • And of course, the Bible is full of people who boldly followed God’s “impossible” instructions to “go!” – Moses commanding the Pharaoh to let God’s people go, and ultimately leading the Israelites out of Egypt (Exodus 2-15). Gideon winnowing his army down (by God’s instruction) from 32,000 to 300 and then conquering 120,000 (Judges 7). Paul continuing in ministry despite shipwrecks, stonings, imprisonment.

Over the years, I have experienced the beauty of rest, as well as the beauty of doing something that is beyond my ability. I like both of those things.

When going — It takes faith to push through the fear of whether or not your body will actually make it. It takes faith to believe that even if you do crash, that God can cover your disappointment and bring you help. It takes faith to believe that His strength will sustain you when you have none. It takes faith to believe that He’s not limited by your limitations. It takes faith to believe that He will give you words to say to people even when your head is all cloudy. It takes faith to believe that He can bring fun in the midst of misery. It takes faith to believe that no matter how long you are able to “go”, that Jesus can use it for your good and the good of others.

When staying – It takes faith to push through the disappointment of not doing what was in your heart. It takes faith to believe that your relationships will be okay even when you’re not around much. It takes faith to believe that God will speak to you even when you don’t attend that church service or meeting because if He wants to say something to you, He knows how to say it in any setting. It takes faith to believe that though you’re only ever able to offer a little, it is enough and He knows what to do with it. It takes faith to believe that He knows how to cover over any people who you were supposed to be leading that night. It takes faith to believe that He can give you a rich, fulfilling life even when you’re stuck at home.

Oh my friends, both “staying” and “going” have endless possibilities for big faith stances. How wonderful to be confronted with our need for God. Honestly, I mean that. I hope to be well someday (and hopefully someday soon), but I never, never, never want to forget that I daily need Him. And being sick is a reminder of that. It brings me to ask the Lord for wisdom and direction every day.

So, I have come up with a saying in the last year. I really like it. Would you like to know my daily prayer? It goes, “Lord, would you like me to have the faith to go – believing that you will give me the strength and grace? OR, would you like me to have the faith to stay – believing that You know how to comfort me and that no one (me or others) will be robbed?”

Both are faith. Truly, both are faith. It is a faith-fight to go, and it is a faith-fight to stay.

Resting is a beautiful thing. “Rest” has over and over again been the answer and my instruction from the Lord the last seven years, and it has not come easily. I’m more of a “go” kind of person, but I have really enjoyed and been blessed by resting in God’s grace. Resting confronts me even more with my weakness. Resting is quiet and tender. Resting doesn’t have distractions in the same way. Resting has been the vehicle by which God has convinced me that He loves me for who I am, not what I do. Resting has been the vehicle by which God has convinced me that He sees me and knows how to bring peace and comfort into a turbulent situation. Resting has been the vehicle by which God has shown Himself strong for me by taking care of the people whom I felt needed me. Oh man, God is so good and faithful. He doesn’t want me to spin my wheels trying, trying, trying to make life work. Instead, He keeps speaking “rest” and bringing me help. It’s amazing. This is kingdom stuff.

So, let’s get to the practical, what about the MANY times that I don’t feel like I have an answer to my prayer? (And by answer – I mean “a sense of peace about what to do”). Such a good question, friend. There are two things that I do when I don’t feel like I have an answer from the Lord:

  1. I talk to someone who knows me well. I ask them to help me gauge what maybe I can’t see. That’s not bad or “less-good”, by the way. God means for us to be in relationships. God gave spiritual gifts in order that we supply what each other needs. God set up a system of discipleship, so that others can speak into our lives. It’s wise to ask for someone’s help – even in just wading through the muddiness. My person is usually my husband. Sometimes, I’ll ask a couple of other people. But, not surprisingly, these people often say, “Oh Kayli, really? Really? You can’t even stand up. It’s okay to stay home. No one would want you to push yourself like this. We’ll figure out a way for you to still get to partake. Let’s get you set up with a movie and a coffee, yeah?” Yeah. Thank you, Jesus, for people who can help us understand the grace to stay.
  2. And sometimes, I just pick one. I don’t labor over it. I let myself breathe easy… believing that it’s okay to switch plans. Believing that no matter what, God will take care for me. He’s not perplexed by any situation. He knows how to burst into any hard place. So, when we ask, and we don’t feel like we’ve heard from Him, then I believe that’s okay. I know that God knows how to get my attention. The good news is that the Bible promises that He’ll be faithful to us. The Bible promises that God is near, that He’ll never leave us. So, it’s okay. I’ll be okay.

Today, I’m hoping that this letter gives you a breath of fresh air – a reminder that you can demonstrate your faith many ways. I like that “going” includes more people. I like that “staying” is often just Him and me. There’s so much grace and comfort and joy and peace for us to live in. God is good, and His plans for us are good (Psalm 119:68). How securing is that?! How wonderful that God promises “good” in the midst of “hard”.

Whether you’re a fellow Lymie or not, life is full of extraordinarily difficult circumstances. The reality of it is that it’s hard. But there is a bigger, more true reality that is deeply filled with God’s goodness.

P.S. This post is mostly addressing the fact that faith can take multiple forms. But, I find myself wanting to do a Part II (hopefully soon) that is more of an actual Bible study on how to “hear from the Lord”.  In the meantime, I offer you this oh-so-very-encouraging-to-me reflection by one of the people who has most helped me, my old boss Daniel Brown:

HOW CAN I ‘HEAR’ JESUS’ VOICE BETTER?
“When he puts forth all his own, he goes ahead of them, and the sheep follow him because they know his voice.” -John 10:4

All of us who earnestly follow and surrender to Jesus want to hear Him speak—more and more, about anything and everything. His voice comforts like a shelter in a storm, like an unmoved landmark guiding our steps. We welcome His voice even if He is correcting or repositioning us like a coach calling out to us during a game. Once we know it’s Him speaking, we reply, “Have Your way in me.”

But we hesitate when we wonder, “Is that You, O Lord—or me?” If we’re not sure who’s speaking, if we question the source of that inner voice, uncertain if our brain or our King whispers counsel, we don’t want to commit ourselves to following.

Be encouraged that even if you sometimes feel badly about not being able to ‘hear’ God better, your very reluctance about saying/doing something, UNLESS you’re sure it’s something God is leading you in, confirms you as one of His own.

For most of us, most of the time, it isn’t the difficulty of what God asks us to surrender, do or say that makes it hard to obey; what makes choices difficult is not knowing if it is the voice of our Shepherd. So, how can we ‘hear’ His voice better?

From my spiritual journey, I offer two ‘helps’ for hearing better:
(1) Listen to the echoes. Jesus, the Word of God, mostly speaks through the written word of God. The more Bible verses you know, the more echoes of the Bible you will hear when Jesus speaks.
(2) Listen to the tone of voice. Jesus the Good Shepherd, who is gentle and humble in heart, mostly speaks tenderly, encouragingly and quite personally. He sounds like what He seems like in the gospels.

Alrighty, well thank you for reading my very long post. Till next time, friends!

treatment part 7: herbal medicine

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My dear friends, today we’re talking about herbal medicine. It’s a fun topic for me, as I have noticed such a big shift in my own thinking as to the importance of herbs in conjunction with my Lyme treatment. Originally, I expected that we would rely almost solely on what I could pick up from the pharmacy. What we actually do is a combination of Western medicine (conventional medicine) and Herbalism. My Lyme doctor practices “integrative medicine”, which means that she aims to take the best of what all medicine has to offer and present me with that option. I really appreciate this about Dr. G – that she is looking at all of the possibilities in order to find the right combination for me.

Now, for those of us totally new to an herbal approach, let’s talk about it. The University of Maryland Medical Center says this:

“Herbal medicine, also called botanical medicine or phytomedicine, refers to using a plant’s seeds, berries, roots, leaves, bark, or flowers for medicinal purposes. Herbalism has a long tradition of use outside conventional medicine. It is becoming more mainstream as improvements in analysis and quality control, along with advances in clinical research, show the value of herbal medicine in treating and preventing disease.

Recently, the World Health Organization estimated that 80% of people worldwide rely on herbal medicines for some part of their primary health care. In Germany, about 600 to 700 plant based medicines are available and are prescribed by some 70% of German physicians. In the past 20 years in the United States, public dissatisfaction with the cost of prescription medications, combined with an interest in returning to natural or organic remedies, has led to an increase in herbal medicine use.”

My friends, before I share with you a little bit about my experience with herbal medications, I need you to raise your right hand and repeat aloud, “I, ______ (your name), do solemnly swear not to go off on my own and treat myself with super-duper powerful herbal medications.” Thanks, friends. That makes me feel a lot better. Because, honestly, herbal medications are potent, and it’s never a good idea to self-medicate.

I’ve tried many herbal medications over the years. Most of the time, it has been in conjunction with pharmaceutical antibiotics or antivirals, but I have also done ½ a year using only herbal medication.

Here are a few examples of one’s I’ve used:

Curcumin – is an anti-inflammatory, supports cognitive and cardiac function, etc

Berberine – kills bad bacteria, is an anti-inflammatory, regulates blood sugar, etc

Ginger – works as a pain reducer, decreases digestive issues, etc

Garlic – detoxifies heavy metals, combats sickness, is rich in vitamins, etc

Cordyceps Sinensis – increases energy, activates the immune system, acts as a tonic for the whole body, etc

Grapefruit Seed Extract – breaks apart Lyme cysts, is an antimicrobial and an antioxidant, etc

Sanguinolenta Root Extract – is an anti-malarial and an antibacterial, etc

Stevia Extract – helps to control blood sugar, blood pressure and cholesterol, etc

Baical Skullcap – is immunoprotective, is an antibacterial and antiviral, and helps circulatory issues

Houttuynia Extract – is an antiviral and an antibacterial

Licorice Root – useful for digestive issues, adrenal fatigue support, and pain relief, etc

Serrapeptase – reduces pain, is an anti-inflammatory, promotes normal blood clotting, etc

Andrographis – is an antiviral and an antibacterial, helps repair the gut, works against hypoglycemia, etc

Cat’s Claw – boosts immune function, repairs DNA, is an anti-cancer agent, treats arthritis, etc

Resveratrol Ultra – reduces inflammation and cholesterol, is an anti-cancer agent, etc

My experience:

I have enjoyed using herbal medications in my treatment. Dr. G has added herbs or taken them away in different seasons, according to where she feels like my body needs support. Under her care, I have also tried an all-herbal protocol laid out by Dr.Stephen Buhner, one of the foremost doctors in the Lyme herbalist community. I was using his protocol specifically for people who have Lyme, Bartonella, and Mycoplasma infections.

I have and still do herx (experience Lyme bacteria die-off) while taking herbal medications, including the 6 months where I was ONLY taking herbal medications. To me, this says that these herbs are valid and effective. I’ve rarely had side-effects with these meds, definitely fewer than western / conventional meds. The only non-herx symptoms I can knowingly attribute to herbs have been nausea and digestive issues.

Should you be interested in using herbal medications as part of your treatment, I suggest talking with your doctor to see what their views are AND if they have any experience with using it successfully in the treatment of others.

Researching for yourself is also very helpful; as we have painstakingly learned in the patient community, “You are your best advocate.”  Leafing through one of Buhner’s books could be a great starting place. His book Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and It’s Co-infections is his seminal work. He went on to write other books specific to groupings of co-infections: Babesia, Erlychia and Anaplasma and  Bartonella and Mycoplasma. What I appreciate about his books is that he takes the time to explain benefits, side-effects, dosages (remember your solemn vow above), and the most reputable places to buy herbs… as well as the longest list of medical journal references I’ve ever seen.

Final thoughts:

  • Herbs, which are basically “super-food” plants, have been used medicinally throughout all of human history.  To me, it’s reasonable that they would still be a viable form of treatment – either in conjunction with western medication or on their own.
  • Herbal medications are potent and should be used under the care of a doctor. Because it is easy to order them online, it’s natural to think that it’s not really a big deal. But actually, this stuff is a big deal, and you want a doctor who knows what they’re doing to find the right treatment plan and to be monitoring you.
  • An additional reason it is so important to be under the care of a doctor is that they will also tell you where to get your herbal meds and what brands to buy. Like food, not all herbs are grown and processed equal. You want to go with the reputable companies who sell pure, high-quality products.
  • My friends, I hope you feel the freedom to think about new things to add into your treatment protocol that seem doable and exciting. It’s amazing to me how many different things are available to help our bodies fight and recover. What a hopeful thought!

an unbelievably high cost

My friends,

There is a truth that most Lymies would like to express, but rarely say because it is so intimate. It is a fundamental truth of our lives that if received poorly  would feel devastating. And frankly, it’s just plain awkward. But if our loved ones could know this and believe it, it would be incredibly securing.

The truth is that literally everything we do has a high cost attached. Literally everything we do is a fight. Never once are we care-free anymore. There is thought, intention, strategy (and often anxiety) over anything beyond reaching for a glass of water — and even that isn’t entirely off-limits.

What do I mean? There are all of these hidden, deep, frustrating moments for a Lymie. Normally, people don’t cry or crawl as they fight to go up two flights of stairs. They don’t get intimidated by the thought of walking to the mailbox. They don’t put off showering for five days because they just can’t stand for 10 minutes in a row. This is what a Lymie does. Lymies may only put one thing on their to-do list for the day, and feel it’s a victory if they accomplish it. Lymies know that getting outside of the house even twice a week is “winning at life”.

When it boils down to it, normal life things — like cooking dinner or writing an essay — are huge things… and leave you recovering for many hours or even days. And small things are still big things: Talking on the phone for 5 minutes. Processing information in a meeting. Cutting your meat at dinner. Choosing tomorrow’s clothes. Picking up a child. All of these things have a tangible and noticeable cost.

In the end, no action, no thought is “free”.  Lymies pay dearly out of their physical, mental, and emotional reserves, so every action has to be weighed. Every action has to be prioritized. And not every action that is in our hearts is able to be accomplished.

Let’s just be honest… This sounds dramatic. The sad and shocking truth is that it’s not. Most of the chronically ill people who I know are major power-houses… They are the people who ran organizations, had four kids, and still managed to find time to serve others. Now, when I see them laying in bed week after week, I have this sobering thought… They are (I am) operating at 5-10% of what they used to. That’s alarming. That’s devastating. It’s so hard to comprehend – both for the Lymie and their loved ones.

Chronically ill people tend to have a hard time being honest about what their lives really entail, especially when they have an “invisible disease” (a disease where you are very sick but look normal). Sometimes it’s simply that they want to focus on the good in their lives, because they know it would be easy to wallow. Sometimes it is fear of not being believed, because of judgments made by people in the past. And sometimes, it’s because their lives are simply not easily understood. When you’re living with such apparent loss, sharing details feels tender, vulnerable, and intimate… Other people’s responses can be craved and feared at the same time. 

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I think that communicating difficult truths is like walking a tight rope. It’s difficult to know how to communicate in a way that is most helpful… That rare, beautiful footing which gives us freedom to be open and dignity to still be “Me” and not “Sick Me”. Each chronically ill person I know has had trouble with this. It’s just what happens, and it’s difficult to keep towing the line… Especially because each step forward restarts the balancing act.

Being honest to this degree has the ability to change how people think of us, and it feels risky.  We don’t want your perception of our identity to be “sick”. We don’t want to be uninvited from participating in life. But we do want you to know our world, so that we don’t shoulder it alone… so that we can feel known.

So, I want to say something directly to you, my dear Lymies, and I want to say something directly to your loved ones.

My dear Lymie friends:

Your life has a high cost attached, one that no one could ever fully understand. I am so sorry that even simple things are painful and long-lasting. I’m so sorry that it takes you two hours of great effort to get out the door for the day, and that you have nothing left of yourself when you get home. I know it’s discouraging. It is unbelievably tough to be constantly “on” — thinking about the ramifications of simply living life. And though it sounds cheesy, please hear me and believe me when I say that you’re amazing. Because life is costly for you. Any living… just breathing is a great feat. It requires strength just to get through the day.

And what is even more amazing is when you give your precious strength to anyone else. Baking a birthday cake, making a meal, dropping off your neighbor’s kids after school, calling a friend who had a rough day, holding a door for someone with full arms… It’s all amazing, because no one could ever know how much it costs you, and yet you do it anyway. There is this story in the Bible about a poor widow who gives her last two coins as an offering to the Lord. Meanwhile around her, all of these rich people are dumping in a lot… And Jesus says that she gave more, because the rich people gave out of their overflow but she gave out of her need.

When every action is precious, any offering of our time, our bodies, our hearts… is beautiful. It’s deeply beautiful to give out of what already feels lacking. My friends, you are very rich people by knowing the weight of what you offer. So, please, please do not be discouraged that your gift is small.

What you do is big. What you do is important. It’s enough. And when you literally have nothing, know that it is okay. You can only do what you can do. It’s heart-breaking to be so limited, but even if no one understands… You can rest in the integrity that you just don’t have it in you to perform an action. I hope you can rest in that.

And dear loves ones of Lymies

Even if you have always been perfectly supportive in the way your Lymie craves, they may still lean towards clamming up. If they are, my hope is that you will shower them with a feeling of safety, kindness and patience. As I have told you before, watching a loved one be sick is incredibly hard. Your job is hard. And I’m sorry for the struggle and helplessness you often feel along the way.

But since you desire to help, let me offer you some practical suggestions of what to do with the information I just shared:

  1. Mimic my encouragement that your Lymie is awesome, courageous, and strong simply for living, for continuing on.
  2. Keep inviting them to participate in your life (attend the birthday, make muffins for the bake sale, grab a coffee, read your manuscript)… Because even though it is a high cost, they want to be included. They want to try to be there. They care for you, and want to be part of your lives as much as possible.
  3. Communicate continually that their presence in your life is the real gift… That there is never any expectation of their doing more than what their bodies can do in the moment.
  4. Acknowledge that you see the offerings of their heart, and that it is more than enough, and appreciated.
  5. As always, I recommend offering any help that you are able. Chronically ill people have this tendency to think that people will eventually tire of taking care of them, so they stop asking… though what they are going through never gets better. When you think of it, when it is a fit for you… offer your help.
  6. Have grace any where you can. Living in high pain has a way of eating at you, and wants to consume you. Even with the best of intentions, your Lymie may wind up cranky, angry (at themselves, at the circumstances, or at you) as they realize that the cost is higher than they imagined. They may have over-committed and need to back-out, as their body wore out before expected. Your job is to “cover” for them when they can’t do what they hoped… to “cover” for them when they need patience or comfort… that’s hard, and beautiful. Having grace. Choosing to “cover” for them is amazing. You get to be amazing too.
  7. Remind them of all of the mushy, heart-warming, true things. Remind them that just because they are operating at a low percentage, doesn’t mean that they, themselves, have disappeared. They are just as “them” as they were before. They aren’t hollowed out. They still bring something to the table simply by being themselves. You love them always, and believe the best about them.

Finally… Have you ever felt an earthquake? Where I live, I’m constantly feeling tiny tremors, but I’ve never felt a big quake, certainly not anything inducing damage. Lymies live on the fault line. They feel the big impact of their actions and circumstances (controlled and uncontrolled) every day… Where the rest of us might only feel tremors. It’s exhausting, frustrating, and their body is actually falling apart. The problem is that the damage is hard to see. But it’s there, and the more we acknowledge it, the less confusion and misunderstanding there will be. I think we all want good relationships. It’s when life is shrouded in mystery, walls, pain… that we feel separated. So, let’s all keep talking. Let’s drag this thing out into the light, and take joy in being together.

While we wish Lymies did not have to pay such a high cost for small actions, let’s remember that we pay high costs in life for valuable things… and then we hold them dear. The smiles, the laughs, the little acts of service are big, beautiful, and meaningful. I delight in that. I delight in knowing what is valuable in life.

treatment part 6: brain exercises

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My dear friends,

Today I want to talk about a fabulous form of “treatment”: brain exercises. Yes, it is actually a real thing that my doctor asked me to do as part of my treatment plan. It may sound insignificant compared to the other options for getting well, but it’s actually very helpful and 100% good for you. Remember, I am a big fan of avenues that help you get better that have no downside.

Did you know that your brain can be retrained to work better?  For those of us who suffer with memory loss, trouble focusing or making decisions, confusion, or even getting lost… we can literally help our brains heal. Our brains can create new connections by doing brain exercises.

My friends, I know that the idea of doing brain exercises may make you want to pull your hair out. There are many days that I feel that way – even though I am convinced it is helpful. When we feel so “fried”, it sounds like the last thing we want to do… but that is actually an indication that we need it!

So, let’s talk about options:

  1. BrainHQ – This is an app my doctor “prescribed”. It was created by a team of neurologists, in order to help their patients with the things I mentioned above, as well as things like auditory processing, sorting information, etc… I’ve used it, and was extremely impressed. As opposed to some other programs, it is truly challenging (in a good way). Throughout the months, I could see that my brain was making improvement. It has some free exercises that you can do daily, but you can pay for a subscription that gives you access to all of their 29 games. If you subscribe a month at a time, it is $14 per month. If you subscribe for a year, it is $8 per month.
  2. Peak – This is an app I found on my own, and I love it. It doesn’t feel as challenging as BrainHQ, but I do find it more fun; I look forward to playing it each day. It also has some free exercises that you can do daily, but a subscription will give you access to all 36 games. If you subscribe a month at a time, it is $5 per month. If you subscribe for a year, it is $3 per month.
  3. FitBrains – This is an app by Rosetta Stone. It is not as challenging as BrainHQ or Peak, but I did find it helpful. This is perhaps the most user-friendly / intuitive of the three. They have a free trial period only; after that, you would have to subscribe in order to keep playing. If you subscribe a month at a time, it is $8. If you subscribe for a year, it is $3.33 per month.

All of these options are good. I’d suggest you try all three before subscribing. That way, you can decide which is your favorite. When you do this, I’d “exercise” for 15-20 minutes a day. Stay consistent with it, and within a few weeks, you should be able to notice your cognitive function improving.

I have a funny confession. There was a point where I was turned off by the idea of subscribing to one of these. My thought was, “I’m paying so much for everything else… I don’t know how I feel about spending this.” Then, I had a reality check: “I’m paying so much for everything else – doctors, medicine, oxygen therapy… and this is so cheap but helpful! What was I thinking?!” So, yes, my friends, I think this is totally worth it. It can only help you, and the science backs it up that it does. It actively strengthens your brain, which is a big deal when Lyme is tearing it apart.

A disclaimer – friends, you should be forewarned that you may feel mentally exhausted and scrambled after playing these games. It can take a toll, but don’t be discouraged. It’s like all of the other treatment: you feel bad for a while, so that you can feel good later. (P.S. The mental scramble doesn’t last too long either).

I hope you enjoy these, and I hope that you feel mentally clearer quickly!

 

“Jesus, what’s next?”

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Questions are an amazing start place. I want to ask more questions. I want to assume that I don’t have the full picture. This is something I’ve been practicing for a few years, and I have to tell you… every time I do, I’m grateful in the end. Being open to a fuller picture or a different picture makes room to discover something new.

In sickness, we try hard to understand our bodies, what treatments are available and could help. We work tirelessly to understand. And that is good. There are so many waves of symptoms, waves of emotions, waves of spiritual attack (fear, futility, bitterness)… Life and our health are always changing, which means we have to make decisions often and quickly. There are so many forks in the road. And we try to be wise, which is so good. So very good.

For me, I very much want to do my part to understand, to pay attention, to consider, to talk with trusted loved ones about what they think… but there is more. Even more than the wisdom I could come up with… is the wisdom that comes from Jesus. When I have decisions to make (whether large or small), I like to ask Jesus, “What’s next?”, “What do you want for me?”, “Where would you like to lead me?”.

My friends, I don’t actually have a lot to say you tonight, except this simple thing: that asking Jesus questions throughout our health journeys will make life infinitely more peaceful, hopeful, and us more confident…

God tells us what He’s like in the Bible. He makes promises to us of what He’ll be like regardless of what we do — He promises that He will never leave us or forsake us, that His plan for us is abundant life, that His character is kind, faithful, loving… That we can trust that His directions in life are good.

And not only does He tell us these things, but we have people who corroborate the story. David says that he has experienced the goodness of the Lord: that He has experienced God leading Him in paths of righteousness, in green pastures [places full of life], beside still waters [places characterized by peace]. Paul says that he has learned the secret of being content in every situation through God’s security. Isaiah prophesies that God will send someone to bring justice, to bring hope to the brokenhearted and the sick… and that is fulfilled by Jesus’ coming.

I follow a good God. I follow Him. I want to follow Him. I try to follow Him… and the way to do that is by going back to Him over and over asking, “What’s next?” … because I know Jesus wants to lead me [us] in good, clear, hopeful, comforting paths.

It’s over-simplified, I know. Sometimes the answer doesn’t seem clear, or takes a while, or feels overwhelming. And I would urge you to keep asking, to study the Bible and the way God speaks to us (what His voice sounds like), and I would urge you to talk to a trusted pastor or leader who can help in that listening time.

I’m in a listening time. That’s why this is fresh for me to say to you. I’m asking, “What’s next?”. I have some big decisions right now. It is not a fun or comfortable place; it’s quite difficult. But it can be a good place. It can be a place where Jesus proves to us that He’s real, that He cares deeply about us, and that He will lead us when we ask Him. And that is deeply securing for all of our lives.

first steps in healthy eating

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Hello dear friends.

It’s finally time to talk about food. Gosh, I just love food. Honesty moment — I often start humming and swaying a little bit as I eat. Food is the best!

BUT…as much as food makes me happy, “what I’m going to eat” is one of the greatest sources of stress in my life. It sounds silly, but it’s true. Even though I conceptually enjoy cooking, it’s stressful knowing that I have to cook when I don’t feel well, because I HAVE to eat and there is no food in the fridge. And not only do I have to eat SOMETHING, but it’s got to be pretty healthy, otherwise, my body will revolt. Exhale. And if it’s stressful for me, I’m guessing it’s stressful for you too.

I’m hoping to take away some of your stress by talking to you today about how to start eating healthier. Now remember, this is a “Lyme for dummies” blog. So, I’m going to share with you what I know (and suggest a few fun recipes), and then send you on your way to do further research. Let’s begin!

Thoughts from my doctor –

I’m going to break my general rule of “don’t give specific instructions from my doctor”, because the things she suggests are just good common sense. Her beginning base line for new patients is to start here:

  • Modify your diet to eat higher proteins (fish, meat, eggs, soy). Proteins are necessary for many important functions. It would be tricky to simplify its uses here, but read up if you’re interested.
  • Eat fewer carbs (pasta, bread, rice, grains), which are inflammatory agents.
  • Add more vegetables. Mmm vegetables… rich in tons of vitamins and minerals.
  • Reduce sugar, even good sugars like fruit, since it is inflammatory agent.
  • If you eat dairy, eat plain cultured yogurt, which contains bacteria that is good for your gut.
  • Eat fresh, raw garlic as much as possible , which is rich in vitamins, boosts your immune system and can detoxify heavy metals.
  • When you’re too nauseous for normal food, stick to the BRAT diet for a bit: Bananas, Rice, Applesauce, Toast.

Baselines are helpful. These simple points will give you a starting place.

Things to pay attention to:

  1. Allergies: Many Lymies develop allergies or intolerances to certain foods. The most common are gluten intolerance and lactose intolerance. If you feel like you are having new allergies / intolerances, you should definitely talk to your doctor at your next appointment. In the meantime, you could also do a little experiment at home by cutting that food out for a few weeks to see if you feel better without it.
  2. Blood sugar: Many Lymies also develop hypoglycemia. This occurs when your pancreas creates too much insulin, thus resulting in you not having enough sugar in your blood. Then, your body crashes (e.g. become lightheaded, fatigue, tremors, tachycardia, etc). This is something to look out for. If you feel that you are having crashes in-between meals, you can ask your doctor for a blood glucose test.
  3. Salt: Now, please take this advice with a grain of salt (bahahaha)… One thing my doctor tells me constantly is to “eat more salt”. I was surprised at this, but it actually makes a lot of sense. When you are taking large amounts of medication, you have to drink lots and lots of water. However, if you don’t have enough salt in your system, the water will go through you too quickly, taking many benefits of the medication with it. So, make sure you’re eating salt. An easy way to know if you’re not eating enough salt is to think about how quickly you use the restroom after drinking water. If it feels like you’re not retaining water (you immediately use the restroom)… then up that salt.
  4. Matching symptoms with food: I get excited researching what specific foods do for the body. I love discovering that blueberries help with memory, and that olives are super-food for adrenal glands. Amazing! Then, I try to eat more of that food particularly when I’m noticing that the corresponding system in my body could use some extra help. Do you like my kindergarten approach at life?
  5. Cravings: Over time, I’ve noticed that my body now craves what it needs without me having to do the research I talked about above. I’ve essentially been doing “craving training” with my food (the symptom match game), so that my body now craves what it specifically needs. It’s amazing. I never thought I’d crave Kale.

I have found that paying attention to these things is enormously encouraging. So much of the time, I feel like my body and I are separate. There’s me, and then there’s my body that limits me and causes me problems. Making an effort to understand my body’s food needs, and then gaining momentum in that understanding… reminds me that my body is fighting, that it’s trying to give me cues, and that we’re on the same team. Again, enormously encouraging.

Meal Ideas / Recipes –

In case you’re looking for some meal ideas, below are some of my favorites. They leave me feeling good, full, and excited to have leftovers the next day. Most of them are actually pretty quick to make. Enjoy!

By the way, we do eat “normal food” too. We love making homemade pizza, zesty chicken alfredo, tacos, etc. So, don’t feel like eating healthy has to mean giving up on things you love. It’s more about making your food from real food. (Cutting out processed stuff). We shoot for making everything at home ourselves with fresh ingredients. However, my deal with myself is: “I’m sick, and therefore, there will be nights when I can’t cook. Eating is the main goal, so whatever I need to do to eat is enough—even if that means a frozen pizza…” And exhale.

Lost on where to get started? –

Changing the way we eat can be incredibly intimidating. Finding new recipes. Buying new ingredients. Cooking with new foods. Intimidating. Pinterest can be a fun place to search for healthy meals. A big shout-out across Facebook may also yield you some fun recipes.

A great starting place could also be to talk to my friend, Janie Garber. Janie is a great friend who, through a wake-up call from health problems of her own, radically changed her eating habits and is now a health food coach. She makes clean-eating look exciting, doable, and peaceful (which is amazing!). I highly recommend her. Here is her website if you want to hear more from her. I originally asked her permission to link you to her website, and she responded with an excited “Yes! AND I’d like to make this even easier for them!”… So, if you decide that you’d like her help as a health food coach, shoot her a message in her “contact” section letting her know that you found her through my blog… and she’ll have a special discount waiting for you. Go be her friend! You’ll be so happy!

My friends, I hope this is helpful. I hope this feels like a small enough bite to chew. Changing health habits feels daunting for most of us. It really is okay to take one step at a time. My best advice is to work at being healthy — because it truly will help you feel better — but to ALSO give yourself permission to do what you can, and let the rest go. There’s a lot of integrity in that – doing what we can, and not beating ourselves up for what we can’t. It’s about being healthier in a way that actually works for you. Exhale again…

I wish you fun and excitement in your health food journey. I wish you grace for yourself. I wish you hope.

(And please comment below if you have a favorite healthy recipe to share!)

 

co-infections and opportunistic infections: it’s not all lyme

pawel-czerwinski-674820-unsplash.jpgMy dear loved ones,

When your Lymie talks about their sickness, they probably talk about it in terms of their “Lyme”. What you may not know is that Lyme is the umbrella that we put a lot of sickness under. Granted, we really do have Lyme, but your Lymie probably has a long list of other things going on. For instance, I call myself a Lymie… but I have a dozen separate bacterial and viral infections that we’ve been trying to eradicate. These other infections are known as “co-infections” and “opportunistic infections”.

“Co-infections” are bacterial diseases that were transmitted to your loved one at the same time they received the Lyme Borreliosis bacteria from the tick. There are over 20 confirmed bacterial co-infections associated with Lyme, some of which have dozens of different strains.

“Opportunistic infections” are diseases that have taken hold because your Lymie is immuno-compromised. Viruses, fungi, parasites, and other bacteria thrive easily in an environment that is weak. These can be just as difficult to treat, or even harder.

Here is a quick look at some of the most common infections your Lymie’s doctor is sorting through.

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All of these other infections make treatment much more complicated. Doctors have to know when to hammer away at each infection, and generally, doctors first have to treat the co-infections and opportunistic infections before they can make real headway on the Lyme.

The real kicker is that all of these infections pile on more symptoms, more complications. Let me give you a realistic example of what is really going on when your Lymie loved one tells you they are having a “Lyme flare-up”. This is a good representation of the kinds of things a Lymie might say to another Lymie:

“Well, my CMV and Epstein Barr are high right now, so I had to go back on Famciclovir and Acyclovir… I’m not sure if the fatigue and nausea are from the viruses or from the meds, but I’ve never been so wiped. And my Babesia is really active right now. Even before the labwork proved it, I could feel it. I’m having much higher pain and a constant fever. All the while, the Bart (Bartonella) has transitioned into cyst form. The doxy can’t penetrate that, so might as well go off of it. Man, though, the tachycardia is ever-present, and my blood pressure keeps switching from very high to very low. I’m constantly having to drop to the floor to keep from blacking out. My cardiologist seems baffled by it, which is incredibly frustrating. I’m so confused all the time — thank you, Bart, for taking residence in my brain. I drag myself to the kitchen to eat, and I literally can’t decide what leftovers to pull out. All to say, we’re switching me up from the Doxycycline and Ciproflaxin to Minocycline, Tinidazole, and Rifamin. The switch will cause crazy digestive issues, etc, but it’s worth it if we can gain some ground. I’m exhausted from all of the insurance calls, doctors visits, and trips to the pharmacy. I lay in bed each day willing my food to fly out of the fridge and come to me. So far, no luck. I’d never leave my safe cocoon of a bed if I could get away with it… Just gotta get through today.”

That’s what’s going on in a “Lyme flare-up”… Lots of infections waning and waxing as they decide to rear their ugly heads. It’s always changing. It’s simply easier (and less confusing) to say “Lyme”, rather than list off a bunch of bacteria and viruses with long names.

All this to say, there’s just a whole lot going on for your Lymies. They’ve become experts at rattling off a couple of dozen antibiotics (brand and generic). They know some of their insurance agents by name. They’re not just fighting one tough infection. They’re fighting a dozen!

Their bodies are working over-time, and they are paying attention to all that is happening. They are champs… They are champs who are fighting every day to still have a life. I don’t know how to say this in a way that isn’t corny… So I’m just going to commit. Let’s cheer them on!

If you’re interested in learning more about the bacterial co-infections, check out some of the following research:

  • This comprehensive chart will give you a quick look at some of the co-infections and what they do.
  • This website (though poorly designed) is the best synopsis for each co-infection out there. Note that the co-infections with multiple strains have a link to their own page.
  • This medical journal is a meaty, but interesting read on the most common co-infections.

As always, thank you for reading. Thank you for looking for ways to understand and support the chronically ill people in your lives. This will mean a lot to them. Even if they don’t know that you are searching to understand, they will feel it in their interactions with you. What a beautiful thing you are doing for them. What a beautiful thing you are doing for me. I said earlier that your Lymies are champs. They are, but so are you.

 

what it’s really like

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This is the “in bed all day, don’t bother wearing contacts or make-up (or brushing your teeth?), and your bed covered in medicine bottles” picture. Lyme is an invisible disease, so we look pretty normal when we see you. But this is the real picture.

My dear wonderful loved ones of Lymies, this is a complicated disease we’re dealing with. It’s hard for your Lymie to explain, and it’s difficult to understand from the waiting room.

There are many things that your Lymie probably wants to tell you, but may have difficulty explaining. I’d like to shed some light today on what it’s like to live with this disease (or at least what it’s like for me). I’m only going to give you the basics, but hopefully it’ll help start a conversation between you and your Lymie. I imagine that conversation going something like, “I’ve heard another Lymie say that she feels this way______… Is that your experience too?”

Let’s get started. Here are some of my initial thoughts about what life is like:

  1. It’s traumatic. Every day is full of pain and debilitating problems. Your body can be okay(ish) one moment and then the next you can’t walk. You may get lost while driving in your own neighborhood because your brain literally stops working. You may skip meals because it’s too painful to walk 10 ft to the fridge. You may sit in the dark most days because of migraines. You may only sleep 2 hours each night. You may throw up so much that you pull a muscle. Burning, stabbing, piercing, shooting pain. Diarrhea. Air hunger. Fatigue. Memory loss. This is daily stuff. This is the bare minimum. Seizures, heart problems, brain cysts, allergic reactions, surgeries are the very likely add-ons. It’s a lot to deal with. The bottom line is this: while you may get used to them being sick, they don’t get used to being sick. The trauma is new every day.
  2. You can’t keep up. All of the above craziness ensures you will forget things, have to “rain check” important plans, likely have to stop working, and will spend 95% of your life in bed or on the couch. You’ve never had so much free time, and yet you have the physical energy and emotional capacity for next to nothing.
  3. You grieve over the loss of life. It isn’t just the physical trauma, it’s all the things in your heart, all the people you miss… that leads to continual grieving. The grieving becomes less over time, and you may learn how to cope with it… But I think to some extent it is always there. It’s disappointing to miss weddings, birthdays, be in bed on vacation, put off your dreams. It is wearying, and there’s lots of crying throughout the years.
  4. It’s isolating. Being stuck in bed so much makes you an easy target for isolation. Many people feel alone. Many feel forgotten. Unless you’re able to really fight for relationships, and in return your friends decide to also fight for the relationship… Relationships will drift apart naturally to the point where there are few people left. It’s so sad. I’m of the opinion that the emotional, heart pain of being sick is worse than the physical pain.
  5. You look normal. Lyme fits into the category of being an “invisible disease.” There’s a lot going on that you can’t see. Most of the time, you only see your Lymie’s pain if they let you see their pain. I often wish I looked how I feel. It would make life a lot easier.
  6. It is tiresome having a disease that is not well-known. Lyme is still at its beginning with research, treatment, and up-to-date awareness. Even most doctors aren’t read-up on the recent information of how wide-spread and difficult to treat this disease is.  That basically means 3 things: 1) Your Lymie will have to scour medical journals and books to understand treatment options. They have to become experts and diligent with their care, because so few doctors even know what to do with a Lyme patient. 2) Your Lymie will constantly have to educate their own doctors and run the common risk of being told “it’s all in your head” or labeled as “simply looking for attention”.  3) Because it is such a confusing, little-known disease, it’s not easily understood by loved ones.  There’s no neat box to put “Lyme and co-infections” into. Basically, no one knows what to do with Lyme, and that’s tricky.
  7. It’s expensive. You can easily spend tens of thousands of dollars each year on doctor’s appointments, MRI’s, medicine, PICC lines, surgeries, and home health care. And that’s frustrating. It’s frustrating that in order to try to become slightly better, you and your family will sacrifice your savings and go into deep debt. It’s scary to spend that kind of money on something that may not help.
  8. You have to be your own advocate even when you have no “fight” left. You spend 1/2 of your energy keeping the hamster wheel of your medical journey going — fighting your insurance company, getting your doctor’s office to communicate with your insurance, staying on top of your pharmacy, and getting your home health care to communicate with your nurses. You have to pay close attention to your finances to make sure you weren’t over-charged. You have to be ever-mindful of the 5 different doses of meds and supplements you are taking each day (I’m estimating around 40 pills total). It’s a never-ending cycle where the sick person has to work tirelessly.
  9. The way you live is drastically different. When you are trying to plan your calendar, everything revolves around your doctors appointments, lab draws, therapy, infusions… You have to plan rest days into your week because you know the crash will come after doing errands the day before. You may leave a holiday party after 5 minutes because your body is crashing. You may drive all the way there just to turn around. You may not get out of bed all day except to crawl to the bathroom. Life is different. Life is SO different. When someone asks you, “What’s new?”… The response options are 1) to describe your current health stuff, or 2) to describe what happened to your “Grey’s Anatomy ‘friends'” that day.
  10. Sickness leaves you wide-open to fear and hopelessness. With all of the above things, life is constantly overwhelming. And it’s easy to come to conclusions that are hopeless, fearful, angry, cynical, etc. It’s difficult to think positively. It’s difficult to be cheerful when you feel like your life is a burning building where more and more things keep catching fire.
  11. You change. You inevitably become a different person. There is so much sorrow added to your life that you cannot help but change. Hopefully, you fight to be cheerful despite horrible circumstances. Hopefully you fight against bitterness. Hopefully you let your sorrow make you even more compassionate for others’ pain. But it is such a fight. It is such a fight to not let sickness define you. It is such a fight to learn how to live again. And through all of this good fighting… There is much added to you. Your character changes. What you think is important in life changes. You change.

That’s a snapshot of what it’s like. And not to be depressing, but that’s the extra light version. To fully explain what it’s like, we’d need a few hours and two boxes of tissues (one for me, one for you).

It’s just hard. It’s hard every day for your Lymie, which means, frankly, that your Lymie will be the most blessed, loved, comforted, understood:

  • By your continued presence in their lives.
  • By your grace for their sometimes (often) stinky attitudes.
  • By your reminders that they aren’t forgotten.
  • By your willingness to listen when they want to talk about the hard stuff.
  • By acknowledging that the little energy they can offer you is enough and appreciated.
  • By offering your help in whatever they may need.
  • By offering to pray for the areas in their life where they hurt.

Sickness drains a person in every way — physically, mentally, emotionally, spiritually, relationally, and financially (whew! Lots of ways). But their life can be considerably better simply by being known and loved right where they are, for who they are in that moment. That actually does so much for them.

They need to feel known. They need you to want to know what their life is like. They need their pain to be acknowledged, and they need your comfort.

I have this phrase rolling around in my head all the time, that I want to learn how to “be sick well”. My hope for you is that you learn how to “be WITH a sick person well”. That’s hard too. It takes a lot of patience, a lot of listening, a lot of grace on your part. But I promise, the end result is beautiful. I’ve experienced it! It spreads around compassion, love, and joy — enough for them and enough for you, too. There is such beauty in shoring each other up in our hard places.

Addendum: I do want to acknowledge that sick people don’t have the corner market on pain. Each person on earth experiences tremendous loss throughout their lifetimes, and we are all in need of the care I described above. As much as I encourage you to learn what it’s like to be a Lymie, I want to let you know that it is important to me to do the same for my loved ones. Share your own pain with the Lymie in your life. Chances are that they can relate in a small way (perhaps better than anyone else), and that they can extend the comfort and compassion you so need as well.

Let’s all be excellent at showing compassion. Let’s all be working at the things in life that really matter.

“sharing the veto”: marriage and chronic illness part 2

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I love talking about marriage. Though Kevin and I haven’t been married all that long, it’s been an eventful few years — ultimately forcing us to determine who we were going to be as a couple in some pretty hard circumstances. It’s been a crash-course.

We’re still learning lots, but we’ve definitely found some gems along the way. I briefly shared some of my favorite marriage lessons in the post, “In Sickness and in Health”: Marriage and Chronic Illness. Recently, another gem has been stirring in my heart, and I want to share it with you in hope that it is helpful: Kevin and I share veto power.

My friends, the spouse who is sick is constantly having to assess their body to understand if what they’re doing is smart or not. I can’t tell you how many times we’ve sat in the car outside our destination (that we just drove 40 minutes to get to), and I have to decide if I’m well enough to go in. If you’re anything like me, there’s a lot of back-and-forthness about these decisions. The desire vs. disappointment. The maybe-foolish-but-it-might-be-okay choice vs. the wise-and-not-so-fun choice. It’s a fact of life that the sick spouse has to make judgment calls constantly, and hopefully the healthy spouse is understanding and helpful when the sad decision to switch plans is made.

But, there’s a great opportunity to share the decision-making here. It’s natural to assume that because the sick person knows their body best, if they say they’re “fine”, then everything is okay. But I don’t think that’s always true, or at least it’s not for me. Sometimes I decide to push myself anyway, because I’m stubbornly insistent: “This is what I’m doing!” Or, sometimes I don’t even know that I’m pushing too hard, but Kevin can see that it is a bad idea. Kevin sees a lot that I don’t see. He’s a good judge also, because He knows me.

In my heart, I long ago decided to give Kevin “veto power”. Just like I can decide that I need to go home, he can decide that I need to go home. I can often spot the concern in his eyes, and in those moments I like to ask him, “Is my decision regarding ______________ making you uncomfortable?” Sometimes he says “no”, and sometimes he says “yes”…

If it is a “yes”, the conversation then proceeds one of two ways: 1) I decide immediately that it’s important to me to listen to Kevin’s concern (whether or not I’m convinced) and back-off of whatever thing I’m trying to do, or 2) I explain my reasoning behind pushing myself, and then we decide together if it’s worth it or not. Generally, we err on the side of caution. If something is “iffy”, then it’s probably best to go home — for my health’s sake, for Kevin’s stress levels, and honestly for the good of the people around me who might be worried when I hit “the wall”.

Kevin has as much veto power as I do. He doesn’t expect it from me, but I want to give it to him. It’s a decision that I willingly make, so that he can feel more comfortable. As awful as it is being sick, being the healthy spouse is heart-breaking. Healthy spouses feel powerless as they try to care for and comfort their sick spouse. I don’t want Kevin to feel powerless. I especially don’t want him to feel powerless watching me be reckless with my body’s limits. I want him to feel like we’re a team. I want him to know that I take his concerns seriously. Yes, it’s my body, but it’s also his. We are “one”. We are “Team Albert”.

It’s always disappointing to stay home from the wedding, leave the party early, or turn around half-way to your destination. But I honestly can tell you I’ve been happy with every decision to relent based upon Kevin’s perspective. He can see things I can’t. He has saved me from over-extending myself so many times. When I’m stuck in brain-fog and can’t decide, he can recognize that’s a red flag. I trust him to care for me. I love him and want to honor his desire to keep me safe.

My friends, oh if you do this, your marriage will have many happy, safe, rich moments. The disappointment of not getting to do what was is in your heart to do, is replaced by happiness in getting to listen to your spouse’s heart to love and protect you. And in return they get to feel heard. It’s a win-win. It won’t be the “win” you expected for that day, but I guarantee you that it will be a satisfying “win” for your marriage.

I wish you great joy and deep moments of listening and comfort with your spouse.