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I’m ready for a new year

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It’s hard to believe that a new year is here. It’s a new year, a new day, I have a fresh cup of coffee… but same ole body. Hmm, that didn’t go as planned. I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry, and still have multiple sclerosis to battle.

We have all come through some crazy moments and stumbled through them into another year. Maybe things didn’t go as you wanted, but you made it. Now, that’s something to celebrate along with all the fireworks, champaign bottles and shouts of Happy New Year.

I can see a lot of good in the bad. Yes, there were some not-so-good days, some terrible days, and some downright terrifying ones… but if I truly look, I can see past those times and find the good. Days that made me smile instead of cry. 2024 can be filled with those kinds of days too. Be determined to find the good in the days, weeks and months ahead… even in the pain and the struggle.

Multiple sclerosis is not an easy disease to live with, but neither is the disease of negative thinking. Choose this coming year to live each day looking for the good. Even if there is only one tiny spec of good in a day, choose to find that one spec and hold onto it. It will make your year ahead greater than you ever imagined.

Some people have asked me if I have a resolution for the new year and the only answer I have is that I plan to be a better person than the person I was yesterday. That’s my plan for every day. I make many mistakes along the way in life. Some hurt me, some hurt others, and some have no consequences other than the fact that things could have been handled better.

There are some things I have learned about life along the way. The key is the keep learning. That is the key to life. That is what makes things the most enjoyable. And that is what helps us to progress and improve.

  1. Perfection doesn’t exist, stop looking for it.
  2. It’s not your job to make everyone happy, cut your losses and go.
  3. Choose to spend your time with people who lift you up.
  4. Kindness makes you a better person. Be kind — always.
  5. Only you are the person who can change your life.
  6. Don’t sweat the small stuff. 99.9% of the stuff in life is small.
  7. Living with MS is not a competition. Really, it’s not.
  8. Don’t spend too much time in negative environments. You can drown that way.
  9. People may never understand your pain, don’t hold it against them.
  10. You never have to deal with more than one moment at a time.
  11. Getting truly organized can vastly improve anyone’s life.
  12. Revenge is for the petty and irresponsible.
  13. If anything is worth splurging on, it’s a high-quality mattress. You’ll spend a third of your life using it.
  14. Most of what children learn from their parents isn’t taught on purpose.
  15. Problems, when they arise, are rarely as painful as the experience of fearing them.
  16. Life is a solo trip, but you’ll have lots of visitors. Some of them are long-term, most aren’t.
  17. Wishing things were different is a great way to torture yourself.
  18. The ability to be happy is nothing other than the ability to come to terms with how things change.

Multiple sclerosis doesn’t take a break for the holidays

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Multiple sclerosis doesn’t take a break for the holidays. Oh, how I wish it did. I’ve already filled my refrigerator with tasty foods easy to prepare and have coffee ready to brew. My laundry is done for at least a week and the dishes are all cleaned I just need to put everything away in the cabinets. My Roomba is all set to clean the floors for me so everything seems to be going good… for now.

But I live in a world where the MS Monster is real no matter what’s taking place around me. My parents always told me there isn’t a scary monster hiding under my bed or in the closet, but I now live with one that follows me around every day and even growls at me from time to time. He’s an impatient bugger.

I think its main purpose is to instill fear in me… fear of the unknown, fear of increased disability, fear of being alone, fear of not having needed support. Such great amounts of fear that has the potential of growing and discouraging me from enjoying anything in life. The holidays aren’t as much fun as in the past. I do my best to find some joy even in the worst of times but it’s getting harder to find.

My family will be coming over which could be stressful, but I no longer get stressed trying to do too much. I actually don’t do much at all. I just work to keep the most needed things handy and have plenty of chocolate on hand for an emergency. Like Duct-tape, chocolate can fix anything.

I’m always ready for a battle. With MS I’m basically in a fight every moment of the day. I need to be strong and ready to fight.

I can’t stop myself from thinking about my former life. Was it real? I’m not sure. It’s so far away from my current reality. Sadly, my mind holds onto pieces of things that have long been erased. It has a tendency to bring on depression which can further weaken my health trying to convince me to give up.

I spent years convincing myself that monsters were only in my mind… that they weren’t real, but in this body I’m living with the MS Monster. I haven’t been able to shake him. I’ve worked hard to power through the fear. It’s not easy and comes with lots of lonely times. Most people don’t understand how painful and lonely it can get.

The best way to fight is to take it one day at a time. You are always taking care of everyone around you, but you need to focus on yourself right now. Stay positive and know that we are all cheering you on.

Never stop believing in your extraordinary inner strength. It has brought you this far and will guide you along the way. No matter what life has thrown at you in the past, you have survived it. You are so much stronger than you think. Keep on fighting and don’t give up.

I wish I could take this monster away from you. Remember that you are not alone in this fight. You are amazing.

When did society stop caring for the sick?

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There’s so much evil happening around the world that it makes trying to live a seemingly normal life an impossibility especially with multiple sclerosis added to everything going on. One thing that makes my world better is to not dwell on other people’s opinions about my own life. People who don’t actually matter to me. You know, like the stranger in line at the gas station, those eating at a restaurant that I’ve never met, the unknown person online with unfounded and outrageous opinions, even doctors and nurses that know my name but not really anything else.

If I wouldn’t invite someone into my house, I shouldn’t let them into my head. It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a picture of a bouquet of roses to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want to be recognized for something big by the world. They want the  press coverage and achievements hanging on their wall to show off their accomplishments to prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last longer than any 15 minutes of fame. After all, a hug is eternal.

You seem to see all the crazed SJWs causing chaos instead. How is that supposed to be helpful for anyone? Turning on the news is more depressing than living in my mobility hindered world. Don’t just assume because I’m silent and not asking for help, that I’m okay. Most of the time I get tired of always asking for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice. Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you. Sometimes I just want to be numb to it all but then I realize my thoughts, feelings and my MS story matters so I can’t hide away.

I have to focus on what I can control… giving of myself, my time, my efforts, my stories, and humor. The more I focus on my purpose, the less I give weight to what others think or say about me.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your life story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories. Yes, all pain is different. But there are things that we all share when the darkness comes and we feel hopeless.

You are a being. You exist. You breathe. You love. You fight. You hurt. You feel. And because of everything, because you exist, you matter.

Never let other people’s actions keep you from knowing how incredible you really are. You truly are an amazing person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME! Don’t you forget it!

My muscles are freezing up with the weather

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When I woke up this morning and I truly felt awful. The worst I have felt in a long time. I sat on the side of the bed for about 15 minutes trying to determine if I could even make it to my powerchair. I finally transferred but then had difficulties in the bathroom just trying to brush my teeth. I was struggling to put toothpaste on my toothbrush. I didn’t have enough strength to squeeze a tube of toothpaste with my right hand while holing my bush in the left. I decided to sit in the shower on the shower chair and brush my teeth in there because I have a toothpaste dispenser that can do all the work for me. No shower… just a good tooth brushing.

Just that little bit of work was exhausting to me. And besides it has been below freezing here lately so I can’t move to do anything in the cold. My muscles are all stiff and not helping me out. With me trying to conserve money I don’t run the heat as often as I normal would run it to keep me warm. I’m actually sitting in my lift recliner right now under a heated blanket just to stay warmed up. Electric blankets are amazing.

My hands have been giving me a lot of trouble lately. The stiffness in them just makes everything a quadrillion times harder. I’ve been having a difficult time holding onto anything. My utensils, my coffee cup and even a sandwich. I was able to put together a PB&J but with difficulty. I spilled a jar of jam in the process. As soon as I was able to get some jam on a spoon it would fall off. When I tilted the jar I couldn’t keep the jar steady and it came off the counter crashing the floor. It made a mess that I didn’t want to clean up but knew it would become a sticky mess if I didn’t. By time it was cleaned up I was too tired to eat it. Ugh, such is my life with multiple sclerosis.

Even though my muscles are giving me troubles, my bowels are too. I normally try to use a product like miralax daily to help me out but haven’t had any around so I’m actually going to try a tablespoon of caster oil to help me out since I have some in the cabinet. I have been told that it will loosen things up quick… and by the way my belly feels right now, I know it will make everything better once things come out.

Those are the things people don’t like talking about, but they are real and affect more people then you realize. Oh, and my mom came by the other day and brought me a couple of jars of daily vitamins… the gummy kind. I wasn’t expecting it but it made my day so much brighter. She said she just saw them in Aldi and thought, “Hey I need some of these. Let me buy some for Penelope too.” She’s so great like that. What a blessing. I don’t know if people understand that something so small as a bottle of vitamins can really make a big difference. Anything people can do for others to put a smile on others faces matters.

What if we let people know that they are loved. Not by spending lots of money but by sending a card, writing a poem, sharing a meaningful song, or doing something unexpected. There’s so much we can do even with MS causing us trouble.

I’m sending you my own encouraging note this morning. Take this crazy MS life a day at a time. More than anything, I want you to know that you are always loved. It’s the only thing that really matters. There is so much ahead for you. I know life can be hard, but you are going to make it. Keep hoping for a better tomorrow because tomorrow things could be better. Never stop hoping, never stop trying, never stop believing, and never EVER give up.

We are in a war against our bodies – this is multiple sclerosis

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There is something about having things left undone that sets me on edge. I don’t know why, I guess that’s just how I’m wired. Because the temperature outside is dropping I needed to make sure the air in my van tires were properly set. The cold weather always decreases the pressure so air needs to be added. Like most people, I have a portable air pump so I don’t have to go to a gas station or a car mechanic to pump them up. The temperature dropped to below freezing last night so I had to make sure everything was going to be okay in the coming days.

I was glad I checked them out. I spent about 20 minutes adding air to each tire. I checked my riding mower tires too while I was at it, so all my tires are good to go now. I won’t know it my van tires are properly filled until I go down the road. The sensors in the van will let me know if the air is still too low. Hopefully I filled them up without needing a bit more air.

There are a few more jobs I need to do around the house in the coming days. My to-do list has become filled with an unending list of must-do items. I try my best to tackle my list, but lately it has gotten bigger than I can manage. I’m going to have to get some help if I don’t want the coming winter to overtake me.

Dealing with all the things I need to do around the house doesn’t put MS on hold. When multiple sclerosis stepped into my life years ago and it made a jumbled up mess of my bodies makeup. My internal wiring has been a crazy tangled up mess since then. So the mess outside of my body makes an added mess to my insides as well. Either I’m battling a myline munching monster or it’s life itself complicating everything around me.

It feels as if I’m living in a virtual Trouble board game merged with Operation… My Pop-O-Matic die roller is broken and I have been sent back to start more times than warranted. My Operation doctor is still working to determine which nerves have been cut. Is it the train of thought nerve? The vision nerve? The speech nerve? The funny bone nerve? No one knows.

MS short circuits my bodies ability to properly function and creates chaos where there isn’t any chaos to begin with. Nothing ever seems to go as I want it to. My body seems to have a mind of its own and has adventures without me. I tell it to walk and it rolls around on the floor. I tell it to run and it sits down laughing at me. I tell it to sleep and it throws a temper tantrum. It just doesn’t seem to listen to anything I say. It’s worse than a rebellious teenager.

We are in a war, you and I. A war, not just against a broken pop-o-matic die roller or a faulty operation doctor. We are in a war against our bodies… if there is such a thing. There are so many things I used to be able to do that seem huge today and nearly impossible. Everything from laundry to running the dishwasher, from sorting mail to grocery shopping, from driving through traffic to maneuvering through crowds, they all seem extra hard, nearly impossible, and bigger than life.

You know what I have learned in this messy life we have? I have learned that it’s okay to have an unfinished to-do list. It’s okay to let the dishes sit alone in the dishwasher. It’s okay to not clean out the car, to slow down when I’m in a hurry, to enjoy a moment of quiet with just myself. Each minute is a gift we are given. We get to choose how we use them.

Take more care in how you use your minutes. They are precious and shouldn’t be wasted with worries and frustrations. If that means things don’t get done… oh well.

Use your minutes with care. Do something you love, something just for you, something that will give you a chance to simply enjoy the day. You are amazing and deserve some time just for you.

Don’t let multiple sclerosis hold you back

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I started a new home improvement project. My garage door needs new weatherstripping across the top and sides of the door. I researched the products I need and decided the cost is actually fairly low if I do it myself so I bought all the wood and screws needed.

Yesterday I started the first step in replacing the old weatherstripping. I bought four 1×3 boards that needed to be cut down to 1×2’s. I discovered in order to have a board exactly 1×2 I would have to cut them down myself. I laid the boards out in my backyard so I could use my circular saw to cut them down. I don’t have a fancy setup to hold the boards steady while I cut.

The bad thing is that my legs have problems maintaining my balance even while sitting. I set up a folding chair for me to sit in while I cut the boards, but I had trouble keeping the cut straight while I was working to balance myself. While I used the saw my legs kept slipping and I came close multiple times to falling over. My leg muscles are just very, very weak.

It was such a struggle. I was able to cut the 8 foot long boards about 12 inches at a time. I had to keep shifting the board down to keep on cutting the full length of the board. It took me so much longer than planned. After a pile of sawdust formed I had finished cutting them down. I felt so proud of myself. Next week I’m going to paint them white and a friend is going to come over to help me hang them around the garage door.

So far I feel so accomplished. I know there’s still a lot to do, but for me cutting the boards was the hardest part. I still have to pull the old boards off and sand the old wood before I can attached the new wood in the opening.

I think I make things hard for myself but I feel so good knowing that I am able to accomplish something myself. That’s the stubborn part of me. I have saved over $300 that I don’t have because I’m doing it myself. Multiple sclerosis has made it difficult, but not impossible. It’s almost like I have a challenge set before me and I have to prove to myself that I’m still capable. If I can’t do it, I will throw my hands up and surrender but I want to at least try before I give up.

Giving up like that does happen but so far I have been able to push through many challenges that MS has brought along. Falling over is not something I want to happen. It seems like such a small thing but it’s actually quite big. The time it takes for me to complete the project will take longer than it would have if I was stronger, but even the time delay is not going to hold me back.

Some of the most difficult things for me is doing anything that requires a steady hand. I can guarantee you that in your trying you are going to feel like a failure at some point…maybe even more than once or twice. But choose to be like Thomas Edison at those times. During his work on the lightbulb, he said “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

You will find a way that works too! Whether you find a better way to improve your life or a new way to do something that others tell you (or even you tell yourself) can’t be done, keep trying. Don’t give up on living. Don’t give up trying. Don’t give up no matter how impossible or difficult things may get. Just don’t give up. You will find a way that works for you.

MS symptoms are more faithful than friends

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People thought my life was amazing. That I had it all: talent, creativity, love, a great job, a sense of humor, everything I could wish for, but you know, I realized early on that the fairy tale life wasn’t what I was looking for. I knew it wasn’t what it was cracked up to be and it wasn’t my dream… and that was okay with me.

But then multiple sclerosis showed up to try and put a kink in it all, it tried its best to steal my life, my joy, and any hope I had for my future. At first I have to say it did a pretty good job at it. It sent me into a tailspin and overwhelmed me at every turn I made.

I found out fairly quickly that it’s okay to be scared. It’s okay to cry, to be sad, to fall apart, and to break down. You’re only human. You’re real and facing something realer than real. MS is not something we can just ignore or wish away. We have to face it and look at all our options. Some may be unreachable or too expensive but through a lot of research and reaching out to different people, organizations and foundations, there’s a way to get help if you stay persistent. You just can’t give up hope.

Doctors scared me with all the unknown that was happening in my body and how much was still unclear about a disease that has been around for hundreds of years. Not until recently has any actual new info been discovered and realized about MS. For years many people have suffered and still deal from symptoms that newly diagnosed patients  are able to manage with a simple treatment or supplement. Still no cure… but there’s hope.

You never know when a symptom will show up and decide to hang out with you. Sometimes they are more faithful than your friends. Many people stop coming around when the going gets tough. Friends come and go. It happens all the time. It’s not because of you, you didn’t do anything to warrant that kind of treatment. You deserve so much better, so much more.

You don’t have to try to be strong when you have no strength to hold onto. It may take some time to make sense of all the confusing thoughts you have and all that you have experienced, but don’t ever stop fighting.

Statistics show my life will be shorter because of MS, but there is no knowing what tomorrow may bring or what my life expectancy will actually be. MS hasn’t put a period at the end of anything in my life. I’m believing for a comma. A comma means there’s a pause ahead with more to come, more to tell, and so on, and on, and on.

Enjoy the life you have. There is still beauty in the world. Look really close and you will see it in the most unlikely of places. Wipe away those tears and hold your head high today. You have a future filled with amazing possibilities.

Driving with hand controls

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As many of you know, eight years ago I came close to giving up on ever driving again. I had trouble managing the gas and brake pedals with my numb legs and feet. One time I accidentally pressed the gas pedal when I was trying to stop. That was a scary moment. I came close to rear-ending a car going full speed. Yikes!

My occupational therapist suggested I get hand controls. She even set up an appointment for me to learn how to drive with them. It was a bit awkward at first. I had to think way too hard to do what I had already been able to do with my feet. Which lever do I use to brake? Which one for the gas? How do I steer? Can any car be set up with hand controls? Will I have to be retested for my drivers license? Will insurance help with the costs?

Too many questions… do I really want to make that big of a change?

After considering all my options, I decided to make the change. I wanted freedom to come and go without requiring help from others just to go to the store or to an appointment. I didn’t want to become a burden to those closest to me.

I had already run into disappointments waiting on people to take me to appointments and not showing up as promised. Many times I had to cancel the appointment all because I was waiting on someone else to take me.

Using hand controls to drive sounds complicated but it actually makes driving possible.  There are a range of hand controls to pick from. Different controls based on a persons specific impairment.

I was able to purchase a conversion van set up for a wheelchair driver with hand controls. It has given me the ability to go to the store, appointments and other places giving me much more independence than I thought I could ever have.

 

What people with MS would love to hear

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It’s heartbreaking to hear from a friend or loved one that they have been diagnosed with multiple sclerosis. If upon learning the news you go through a range of emotions—from shock to sadness to anger to fear—well, then just imagine what your friend must be feeling themselves.

It’s only natural when a loved one is going through a health struggle like MS, we want to support them in any way possible. We want to be a physical presence in their life to assist them, but still need to respect their personal boundaries as they navigate a major change in their life. Sometimes, the best thing we can do is send a thoughtful note with some comforting words to let them know that we care.

But even then, it can often be difficult to find the right words. I’ve put together a list of items that someone living with MS would love to hear from a friend or loved one…

  1. “I’m here for you”

    Show up for your loved one and remain by their side as they go through the crazy MS process. And if you say these words, make sure you mean them, and support them through thick and thin.

  2. “Thinking of you”

    I’m thinking and praying for you… and I really mean it!

    Hearing that your wellbeing is on someone’s mind can be a great comfort, and the act of praying may be very peaceful for you as well. If you or your loved one aren’t religious, it’s still helpful to hear someone is sending you good vibes daily.

  3. “Let’s have some fun”

    Tell a Joke… after all, it’s been said that laughter is the best medicine. Ask your friend for suggestions on renting a movie or watching a tv series that might be uplifting and humorous.

  4. “I care about you”

    I don’t know what to say, but I care about you and I’m here for you if you need to talk or just cry.

    Listening is sometimes the best thing you can do for someone with MS. Silence is actually ok. Sometimes those empty spaces allow both of you to collect your thoughts and emotions. Be sure to listen without judgment.

  5. “You are so beautiful”

    I’ve set up an appointment with the hairdresser to give you a new haircut and manicure.

    Feeling confident when dealing with physical challenges can be difficult at first. No matter what physical symptoms your loved one is experiencing, this is an opportunity for you to make sure their inner and outer beauty is recognized by letting them know that they are beautiful… even when in PJs and having messy hair.

  6. “What day works for a visit?”

    Call and ask when a good time to visit might be. Be mindful when you are visiting that people with MS can tire easily and several short visits might be best.

  7. “Let me help you with…”

    Ask if they need help with any particular tasks such as:
    Grocery shopping
    Cleaning the house
    Making a meal
    Laundry
    Picking up prescriptions

    Finding the time and energy to run errands can be a challenge. They may feel ashamed in asking for help with tasks even though it is needed. Show that you are sincere in your offer to help by making suggestions.

  8. “I love you”

    Send a note with a personal gift such as books, movies, word games, small mementos, or special personal care products. When nothing else feels right, these three simple, powerful words can mean the world. They might be just the thing your loved one needs to push through the day.

  9. “There are so many things to love about you”

    MS has a way of feeling all-encompassing. Those affected may feel like their identity revolves around being a patient. That is simply not true. Your loved one is so much more than someone who has MS. They could be a dog-lover, artist, parent… Help them focus on all their amazing traits that have nothing to do with their illness.

  10. “How are you doing?”

    You can be there for your loved one by asking them how they’re doing not just physically, but emotionally as well. Don’t be afraid to ask about their mental health. Sometimes physical symptoms are only one part of the puzzle when it comes to MS.

Life is crazy right now

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Sometimes life grabs us, takes hold and shakes us hard. We are left with our head spinning and we are desperately trying to just hang on. At those times we wish life would give us a break.

Life is crazy for me right now. I can’t keep up with everything going on. I am on day 3 of steroids with 2 more days to go. I have noticed a bit of energy returning which I so need but it can’t come quick enough. I’m trying to be watchful of the foods I eat because steroids have a tendency to bulk the body up. I don’t want that. In those moments, I have learned to give myself grace. I know I won’t make perfect choices, but some forward motion is enough.

When I’m exhausted and struggling to get up in the morning, I may not spend my time in deep thought but I know I still need to care for my body to ensure I can care for those around me. I have to let go of the guilt and shame that comes along with it.

I may not be able to write every day and pour out my heart how I want to, but it is life-giving and important to me to share with you, to walk together. So I’m finding little slices of time to connect with you, usually between naps.

It’s completely acceptable for the laundry to go unfolded so I can spend a few precious moments with friends and family. It’s okay if I have to rely on eating out a bit more. I’m doing my best with what I have right now, but that doesn’t mean I need to spend hours and hours on Facebook or X.

Maybe you’re dealing with your own health issues that scares you with each passing moment. Maybe you’re swamped, unbearably busy at work, or dealing with intense financial stress. In this crazy season, hold yourself to a gracious standard of love. Let the little things go.

Whatever it is, focus on what matters and what is non-negotiable. That’s your baseline. Let everything else be drenched in grace and give yourself a break.

We’ll practice this together.