Author: lifebeyondsurviving

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Three ways to beat feeling useless with chronic illness

So many times those of us with chronic illness feel useless because we don’t have the energy to do things with our kids, to help around the house, or to contribute to the family finances. We’re often too tired or in pain to do the things we think we should do. While we may not be able to do certain things, we can, indeed, contribute to others lives in so many other ways that we probably don’t think matters.

  1. Lower Your Standards for Usefulness
    The first thing I did that helped me to feel as if I had a purpose to my life may sound a little defeatist or wrong. I had to lower my standards of usefulness.

    My idea of living with a purpose and making a difference in the world was HUGE! When I was a kid, it was being a famous singer. As I got older it was being the BEST homeschooling mom and helping others to do big things for God. When I found I wasn’t able to get out of the house much (or off the couch often), that made me feel useless. The house wasn’t clean, the kids couldn’t run and play with me and I wasn’t changing anyone’s life.

    But when I began to see the little things that I COULD do, I realized that they made a difference in other people’s lives…and sometimes a BIG difference! Instead of hosting big events in person, I hosted an event online. (Before that was a real thing!) Instead of running with my kids, I concentrated on teaching and training them with knowledge and helping them discover who God intended them to be. Instead of writing a best seller, I wrote a little blog that helped others with chronic illness live with more joy.

    Those things turned out to be much more rewarding!
  2. Be Virtually Useful
    Just because we can’t reach out in person, doesn’t mean we can’t help especially in the Information Age! As I mentioned before, I ran an online convention for a few years before online events were even popular. I also took to social media to help others deal with every day issues. I had a texting ministry where I’d text a few people daily to uplift them during a difficult time. I also found ways to earn money online via websites and various original products/services.

    So, I was contributing to my household’s finances even though I wasn’t able to hold a job!
  3. Take Up a New Hobby or Purpose
    Sometimes God will allow you to do the same things you’d like to do in a different way (virtually). Sometimes God gives you a whole new purpose! I have a degree in Speech Communication so when I wasn’t able to do in person speaking engagements, I did them virtually. Later on other things became more important to me.

    One of my passions is purple. I’ve always loved the color. About 11 years ago, I started a fan page on Facebook for purple lovers. That page grew to over 10K fans. The page was just for fun. It doesn’t sell anything and I just share and create and post pretty purple things. That’s all. But I can’t tell you how many times I’ve received a comment or message about how important those pretty purple things uplifted someone during a trial in their lives!

    Sometimes you have no idea the importance of something you do for someone else!
  4. See How God Can Use You
    My advice for you if you are struggling to find a purpose because of chronic illness or a chronic condition is to pray to have God reveal to you how He can use you where you are right now. It doesn’t matter what you can’t do. It only matters what you CAN do! So…

    What can YOU do…right now?!
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Don’t they know…

I just had to share this because it’s just too funny. Last week I shared about how my daughter and son in law got me a set of weighted silverware to keep my food in my mouth and not on the floor. Well, I just had to share how it came because I don’t think they quite understand their target market:

If your fingers shake enough that you need a set of weighted stainless steel utensils, you might want to get your husband to help you get them out of the box for you.

Yes. They come with each utensil hard wired in! Each of the two forks and spoons and the one knife comes with TWO twistie ties double twisted (yes in BOTH directions)!

If we didn’t laugh…

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Essential Tremor Tips

If you have Essential Tremors, you probably have a few tips and tricks up your shaky sleeve, but I thought I’d share some of mine.

So, I’ve been posting about my health journey to inspire others to begin their own and I’d love to help you reach your health goals if you’d like someone (a coach) in your corner who’s been there.

Part of doing that means taking some selfies to post and show how my life has changed (and it has SOOOOO MUCH). Selfies are kind of hard when your hands shake but I have found a work around.

My first tip is to hold the thing requiring the most dexterity in your hand that is affected the least. For me, that’s my right hand and happily, I’m right handed. 😀

However, if I needed to do something with my right hand, I had a terrible time trying to hold the camera still and press the button so I enlisted the help of the 10 second delay. After setting the delay, you click the button to take the picture and wait the designated ten seconds. Just make sure you’re not shaking or it might turn out like this:

One way I was able to get a good picture with my left hand was to hold my arm as close to my body as possible, thereby giving it something to rest on. Since Essential Tremor is an action tremor and not a resting tremor, this works pretty well.

Ok. On to other tips I’ve found useful.

I’ve noticed that typing on a normal sized keyboard like on my laptop is a bit tricky, but not quite as difficult as typing on my iPhone or my iPad’s screen. However, if you get yourself a purple stylus, you increase your dexterity quite a lot. I guess it kind of fools your brain into thinking your finger is further away from its target thereby not increasing the rate of tremor.

The last tip I have is to use weighted utensils. I’ve been known to toss a salad on the floor and all over the counter so my daughter and son in law bought me a set of weighted utensils. Having the weight is a bit difficult to get used to at first, but it does weigh down your hand so it shakes less and keeps the olive on the spoon or fork from rolling off into your lap. Ask me how I know.

Got any Essential Tremor tips? Share.

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My Silly Selfie Situation

Life Beyond Surviving was created to help those dealing with chronic illness or other chronic issues to deal with trials more productively by pointing them back to the joy that is often hidden inside the struggles. Part of seeing the light INside your tunnel is being able to see your difficulties as funny. Case in point:

This started off serious and quickly deteriorated into a giggle fit! So, I’ve had this outfit hanging up on the back of my closet to fit back into when I reached my goal weight. I’ve lost 36 lbs and found I could finally fit back into my jeans and size small purple flannel shirt.

I was trying to take a selfie—but things didn’t go according to plan. I have no real experience taking selfies so I stuck my iphone in my left hand so I could gesture with my right. I’m right handed and my left hand is afflicted with more of the Essential Tremors than my right. Gesturing with my left hand might have yielded some awkward results.

The following is what happened in chronological order.

  • Ok let’s see how you do this…oops…I wasn’t ready.
  • Whooops! What button was that?










  • Ok this is the one…or not. LOL





  • Is it on?
  • OK That’s the one! ROFL

By the end of this little activity, I was laughing so hard I was almost on the floor. I decided to post them as is and everyone on Facebook found it hilarious.

Clearly JoJo needs some selfie tips! Got any to share?

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Does Suffering Give Us Super Powers?

There is a line in the movie, Split, where the Beast says, “the broken are more evolved” and he spares the girl’s life because he tells her, “your heart is pure.”

This got me thinking about how I believe there is strength in suffering. Struggles, trials, and suffering are abundant in this life. If we think of our struggles as JUST difficulties to get through or to avoid, we miss the lessons and strength they can give us–even here in this fallen world.

The psychiatrist in the movie says that she believes those with this disorder are stronger than others and she illustrates by saying some are blind, but one of their personalities is able to see. The Beast goes through certain things in the movie and doesn’t get hurt when he most certainly should have.

Of course, this is a movie and not real life. However, I’ve found that the different kind of strength spoken of in this movie is spoken of in the Bible and reflected in my own lifetime of experiences with chronic illness and other difficult situations.

I’ve shared this before, but it bears repeating here. I once had a mammogram technician ask me if I’d been through a lot of struggle in my life. I admitted I had and asked her why. She told me that she’d noticed that people who have been through a lot in their lives are much less vocal about the difficulties with the whole mammogram experience, are more empathetic, and tend to be more compassionate .

The movie, Split, shows us that suffering gives you super powers and I maintain it does! Just not the kind in the movie. And my belief is backed by scripture as I’ll get into in a minute. My purpose for sharing this is to help those of you who struggle with chronic issues, especially those who can’t see a purpose in it, so that you might have a change of perspective from victim (or just a survivor) to a more heroic picture of someone who moves beyond surviving to inspire and lift up others.

Hebrews 12:11 “No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.“

Here are some ways in which the Bible tells us we gain by suffering:

Empathy: 1 Thessalonians 5:11 “Therefore encourage one another and build one another up, just as you are doing.“

1 Peter 4:10  “God has given each of you a gift from his great variety of spiritual gifts. Use them well to serve one another.“

Strength of character: “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” – Romans 5:3-5

Appreciation for Joy (and ability to find joy and humor in dark places): Galations 6:3 “Carry each other’s burdens, and in this way you will fulfill the law of Christ.”

Perseverance: “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” – James 1:2-4

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” – James 1:12

I talked a little about this in the beginning of this blog post, but…

Why is it that God allows some of us to struggle so with things? I believe these scriptures answer that quite eloquently:

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans 8:28

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” – 2 Corinthians 4:8

“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.” – 1 Peter 5:10

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” – Galatians 6:9

I believe that, ultimately, our sinful worldly existence will end and we’ll be with the Lord forever. Until then, our mission is to share the hope that is in Him and live by Galatians 5:14 “For the entire law is fulfilled in keeping this one command: ‘Love your neighbor as yourself.‘”

If we truly love others as we love ourselves, we will have some super powers of understanding if we allow all our struggles and trials to strengthen us.

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Two Babes in a Manger

My pastor shared this story on Sunday. I tried to verify it, but some say it’s a true story. Others say it can’t be confirmed. The story is the same everywhere I looked, but the names of the missionaries are never revealed. It’s a great story either way so I’m going to share it because it has a great message.


Two Babes in a Manger

In 1994, two Americans answered an invitation from the Russian Department of Education to teach morals and ethics (based on biblical principles) in the Russian public schools. They were invited to teach at prisons, businesses, the fire and police departments and a large orphanage. About 100 boys and girls who had been abandoned, abused, and left in the care of a government-run program were in the orphanage. They relate the following story in their own words:


It was nearing the holiday season, 1994, time for our orphans to hear, for the first time, the traditional story of Christmas. We told them about Mary and Joseph arriving in Bethlehem. Finding no room in the inn, the couple went to a stable, where the baby Jesus was born and placed in a manger. Throughout the story, the children and orphanage staff sat in amazement as they listened. Some sat on the edges of their stools, trying to grasp
every word.


Completing the story, we gave the children three small pieces of cardboard to make a crude manger. Each child was given a small paper square, cut from yellow napkins I had brought with me. No colored paper was available in the city. Following instructions, the children tore the paper and carefully laid strips in the manger for straw. Small squares of flannel (cut from a worn-out nightgown an American lady was throwing away as she left Russia), were used for the baby’s blanket. A doll-like baby was cut from tan felt we had brought from the United States.


The orphans were busy assembling their manger as I walked among them to see if they needed any help. All went well until I got to one table where little Misha sat. He looked to be about 6-years-old and had finished his project. As I looked at the little boy’s manger, I was startled to see not one, but two babies in the manger.


Quickly, I called for the translator to ask the lad why there were two babies in the manger. Crossing his arms in front of him and looking at this completed manger scene, the child began to repeat the story very seriously.
For such a young boy, who had only heard the Christmas story once, he related the happenings accurately — until he came to the part where Mary put the baby Jesus in the manger. Then Misha started to ad-lib.


He made up his own ending to the story as he said, “And when Mary laid the baby in the manger, Jesus looked at me and asked me if I had a place to stay. I told him I have no mamma and I have no papa, so I don’t have any place to stay. Then Jesus told me I could stay with him. But I told him I couldn’t, because I didn’t have a gift to give him like everybody else did. But I wanted to stay with Jesus so much, so I thought about what I had that maybe I could use for a gift. I thought maybe if I kept him warm, that would be a good gift.”


So I asked Jesus, ‘If I keep you warm, will that be a good enough gift?’ And Jesus told me, ‘If you keep me warm, that will be the best gift anybody ever gave me.’ So I got into the manger, and then Jesus looked at me and he told me I could stay with him’ — for always.”


As little Misha finished his story, his eyes brimmed full of tears that splashed down his little cheeks. Putting his hand over his face, his head dropped to the table and his shoulders shook as he sobbed and sobbed. The little orphan had found someone who would never abandon nor abuse him, someone who would stay with him — for always.

And the Americans? They had learned the lesson they had come there to teach – that it is not what you have in your life, but who you have in your life that really counts. We should all give thanks for the people that “keep us” — in life — and for all of God’s many blessings to us: freedom from want, life, love, togetherness, and for the enduring love of Jesus Christ, the one person who keeps us warm and safe for always.

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When Even Your iPhone Gets Frustrated with Your Essential Tremors!

Anyone need a giggle break in the midst of 2020? I’ve got you covered! I call this installment of Weird Stuff Happens to Me: When Even Your iPhone Gets Frustrated with Your Essential Tremors!

Yesterday’s cooking event was not without incident. Famous last words: “I don’t need my ‘Kevlar gloves’ to make zoodles!”

So, I proceeded to prove myself wrong by cutting into my nail. This morning while attempting to fill my water bottle, it overflowed onto the counter and the floor. While trying to clean it up, I had an unusual time trying to get the paper towel in my hand and it wound up flying through the air like some Bugs Bunny cartoon.

I decided to write a post about my exciting life with tremors, but while trying to take a picture of my right hand, Siri had a message for me! It’s on the top of the last picture. It says “Hold Still.” 😅😂🤣

I couldn’t make this stuff up if I tried! ROFL

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When You Don’t Think You Measure Up

God made us unique individuals, but as a kid, I was always trying to fit in. It never worked and it was exhausting! I never thought I was good enough, tall enough, __ enough.


My hair was stick straight when big curly hair was in fashion. Now, when straight hair is in, mine is curly on steroids!


I’m 5’ nuthin’ and wear children’s size shoes, gloves, and I just fit back into my dd’s old size 10/12 children’s T-shirt! 🤗


My first car came complete with bucket seats and a telephone book. (Yup! I sat on a telephone book so I could see over the steering wheel!) And my kitchen stove has a matching step stool so I can stir the tall pots. 😉


You know what I learned from all this? To embrace my inner weirdness. (Hat tip to my dd who coined the phrase) You know what? Ever since then, I enjoy being me!

If you always feel like you don’t measure up, try looking at yourself as God does. He created you to be you – not a copy of someone else. Embrace YOUR inner weirdness and enjoy being who He created you to be!

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When Things Happen While You’re Not Looking

When we’re going through something difficult, we often don’t see much progress. We don’t feel God near us or we don’t see an answer to prayer. Most of you, like me, have lived with chronic issues for a lifetime. My fatigue started when I was a child. I could never understand how other teens and pre teens had the energy to run around and even do chores.

As we go through difficulty, we get used to dealing with it as best we can. That’s good, but it’s just as often, bad. What I mean is, we get so used to being fatigued, to not being able to take a shower without having to rest, that we don’t even consider that anything could change and we may not even notice when it does!

Case in point, my weight loss journey. For those who are just joining me, here’s the background to get you up to speed:

I’ve been packing on the pounds for over twenty years. After delivering my son at the ripe old mom age of 37, I was thrust into peri menopause. It was both frustrating and frustrating.

What I mean is, it was frustrating because I was slowly adding poundage. I was a different kind of frustrated because that’s when the Hellish Hot Flashes started. I was all kinds of frustrated that my doctors (plural) would NOT believe I was actually IN peri menopause! And I was frustrated because no matter what I did, what I didn’t eat, how hard I tried to exercise, and how hard I tried, I just kept gaining!

After the hysterectomy four years ago, my weight gain took on Olympic proportions! I was now a whopping 152 pounds! That might not sound like a lot to YOU, but if you consider my stature or lack there of, is only 5′ nuthin’, it was quite astounding.

It took me 21 years to add the weight and I really had no idea how bad I looked til one day I got a glimpse of myself in the mirror. How could I be gaining all those years so much weight and having it make THAT much of a difference…and I not NOTICE??? It happened while I wasn’t really looking. A little at a time. Then, one day, I saw it and BAM!

So, I found my health coach and Mary and I got to work. I began losing weight but just a wee bit at a time so…I didn’t notice. My husband kept telling me that I was looking great, but when I looked in the mirror I still saw a fat me. Until…one day…

It was interesting to me how it went both ways, but that’s not the end of the story. While I was trying to lose the last five pounds of my menopause weight, I was pretty frustrated that my thighs and upper arms still had wagging rights.

However, as I was contemplating the pain level of squats and modified pushups, something amazing happened! My thighs were discovered social distancing! Yes! While I wasn’t looking, my thighs actually responded to…

EXERCISE!

I’ve been exercise intolerant for about 58 years, the sum total of my life here on Earth ever since the space stork dropped me off here. How could it be that I was FINALLY able to do some that actually worked? Answer? I dunno. I think it was just the combination of the incredible job Mary did with my weight loss that allowed me to have enough energy to actually DO any exercise and my husband’s suggestion that I try squats and modified pushups.

I’m both proud and ecstatic to announce that my thighs (and even my calves) are thinner than they have been since I can remember! I’m still experiencing more energy and fewer/less severe flares since my 31 pound weight loss. Meanwhile, I’m working on my upper arms and turkey waggle neck. Film at 11!

What I’d like you to take away is how many times we are actually MAKING progress, but not actually SEEING it. God works that way sometimes. Sometimes we are working hard at what we feel God has asked us to do, but we are not seeing the fruits of our labor. Sometimes we are doing something that WILL have a positive effect on our health, but we don’t see any progress.

Sometimes, we just have to keep looking before we can see it.