Author: lifebeyondsurviving

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Chronic Illness New Year’s Resolutions-Part 1

“Delight yourself also in the Lord, And He shall give you the desires of your heart. Commit[a] your way to the Lord, Trust also in Him, And He shall bring it to pass.” – Psalm 37:4-5

Everyone else is out there making big plans and calling them New Year’s Resolutions. I’m here just trying to see if this new medication is going to help me with one of my issues. But that’s okay because I’m not like everyone else. I have chronic illness.

Chronic issues make lots of things difficult. It’s hard enough to commit to attending a party because you never know how much energy you’ll have at that point or how much pain you’ll be in, but at this time of year, it’s especially hard to make plans for your future. That being said, if you look at it differently, you can do just that.

Who says New Year’s Resolutions need to be grandiose? There’s no law that says you’re a failure if you don’t invent time travel or discover a cure for cancer. You might notice that most “normal” people aren’t planning to rule the world. While you may not be able to plan for perfect health or wealth, you can plan to take a step toward a realistic goal or to something new you have wanted to try.

There are four aspects of our lives I’d like to talk about in this series and the first one is rather obvious for those of us with chronic illness: health.

Part 1: Health
The most common New Year’s Resolution is to lose weight…x number of pounds by such and such a date. At the time I’m writing this, I’d love to lose 50lbs! I’m a short woman (5′ Nuthin’) with small bones so the charts say I should weigh 100lbs. Now, before you all have time to think that this is unrealistic for any woman (even my height or lack thereof), I spent most of my adult life at 103lbs and was quite comfortable at that weight.

While I’d love to be even 103 pounds again, I have a hard time wrapping my head around the monumental task of losing that much weight since I’ve gained so much after menopause and haven’t been able to lose any in the three years post-hysterectomy. Most of the challenge in losing weight for those of us who are chronically ill is the fatigue. It’s hard enough to have the energy to take a shower much less to exercise enough to keep 50lbs off!

But I can resolve to walk a certain number of days per week. I might set a goal to lose 10 or 20 or 30 pounds. Baby steps. They say even if you travel at the rate of a turtle, you’re still moving forward. Moving forward in our goals is a BIG thing for us chronic illness warriors because it’s a much greater accomplishment than anything we ever did as a healthy person. It takes a lot more commitment and strength. Don’t ever discount small accomplishments! Those baby steps add up to giant leaps after a while.

“Delight yourself also in the Lord, And He shall give you the desires of your heart. Commit[a] your way to the Lord, Trust also in Him, And He shall bring it to pass.” – Psalm 37:4-5

Some goals can’t be cut in pieces. Some things need preliminary actions in order to come to pass. So, another way to go is to resolve to eat better, learn about any supplements that may help your chronic issues, or sleep better.

They say that it’s not really a goal until there is something tangible to measure and has a date by which you’ll accomplish it. However, that measure doesn’t have to be a number of pounds and that date doesn’t have to be when it’s all lost. It can simply be that you eat better this year or that you spend a few hours a week researching supplements that can help you.

What’s a health goal you’d like to set that you will resolve to work on in 2020? Leave a comment here with your thoughts. Next week, I’ll be back to discuss one of the other four areas of life that we can make a resolution to improve this year. I hope you join me!

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Happy New Year, Survivors!

I started this blog almost three years ago with the intent to support those with chronic illness and conditions because it’s the chronic part of those terms that make life so much more difficult. It can be a lonely life because chronic issues can limit what we can do or how much of it we can do. It’s isolating.

My heart was to bring some joy, information, support, and humor to a group of weary people who often feel alone and hopeless to control a life they don’t recognize anymore.

My goal is to help others to find the road to living a Life Beyond Surviving! I pray you’ll join me in 2020 to make it your best year with chronic illness yet!

I’d love to hear how this blog has helped you so far. Please leave a comment with your thoughts and suggestions for future posts. Until then, Happy New Year, Survivors!

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Merry Christmas, Survivors!

I pray that this blog has been a blessing to you in 2019. I hope you keep coming back for inspiration, support, understanding, and tips. It’s my mission to uplift those with chronic illness and other chronic conditions and to give them the support they need not only to live better with their chronic issues, but to live a life beyond surviving!

May we continue to journey together in 2020 to bridge the gap from here to there.

Merry Christmas! May God bless you and your family!

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One of the Worst Things to Say to a Believer Who is Hurting-Repost

I want to follow up on my two-part series on Polly Positive to bring you this article I wrote many years ago for my Art of Eloquence communication blog. I was talking about how we communicate with those who are struggling with chronic illness actually affects them, even if the person’s intentions are good. While Polly’s intentions are to bring the person back to Jesus, the timing isn’t right and the message that comes across is quite damaging and, in fact, not biblical:

“Pleasant words are a honeycomb, sweet to the soul and healing to the bones.” -Proverbs 16:24

Sad

I’ve seen it so many times. A sister in the Lord opens up to share a struggle she is going through in the hopes that the fellowship will bring strength to a weary heart. Instead of support, sympathy or understanding, she receives condemnation by well-meaning and faith-filled believers. In place of words of peace and comfort, they rebuke the poor sinner for not having enough faith. They remind her of the mustard seed, how faith can move mountains and how big God is, but what does that do to her suffering? Does it relieve her suffering or does it, in fact, increase it and place the blame squarely on her?

This is actually one of the worst things you can communicate to a believer who is hurting. Why? Because what you’re saying is:

1. Your suffering is your fault

By telling a believer that she doesn’t have enough faith in God, you are telling her that she wouldn’t be suffering if she only had more faith. Since she either doesn’t believe she has little faith or doesn’t see how she can have more, she feels you are telling her that she is ONLY suffering because of her own lack of faith. Essentially, this belittles her suffering. After all, people don’t feel as sorry for those who cause their own suffering as we do for those who are suffering through no fault of their own.

2. You wouldn’t suffer if you only had more faith

After being told she has caused her own suffering through unbelief, the only option given her is more belief. This is sort of like telling someone “Be happy!” Have you ever been upset and been faced with a situation in which you had to go out and put on your happy face? It was difficult, wasn’t it? Magnify that tenfold and think how difficult it would be to put on your happy face after having lost a loved one to cancer or after being faced with financial ruin. Can they do it? I’m sure some could, but what does it require? It usually requires a time of mourning, a time of rebuilding after a period of support and strength that comes from fellowship. Telling someone to have faith after you just told them they didn’t have any, isn’t helpful and it can be a huge detriment to their ability to bounce back after a devastating event.

3. Your suffering is not going to stop until you have more faith

This poor hurting soul who was reaching out for comfort and strength is now frustrated because she is being told that, no matter how the struggle began, it is now her fault, the only cure is more belief and she cannot find an ounce more in her suffering so it’s never going to end. She is now convinced her suffering will go on indefinitely! Struggles are difficult enough when we believe they are somewhat temporary, but when we see no end in sight, struggles take on new depths of sorrow.

We can all build our faith. Even the most faith-filled Christian can become even stronger in the Lord, but this growing in faith usually comes after a period of mourning the loss at the root of the struggle and a period of gathering strength from family, friends and the Lord.

Telling someone their suffering comes from their unbelief is unbiblical. Here are just three examples from scripture:

1. If all suffering comes from not having enough faith, why was Paul suffering?

“And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure.” -2 Corinthians 12:7

2. If all suffering can be reversed by having more faith, why wasn’t Paul healed?

“For this thing I besought the Lord thrice, that it might depart from me.” -2 Corinthians 12:8

3. If Christians are not supposed to discuss their feelings when they are suffering, how can you explain Job?

“Even to day is my complaint bitter: my stroke is heavier than my groaning.” –Job 23:2

“And the LORD turned the captivity of Job, when he prayed for his friends: also the LORD gave Job twice as much as he had before.” –Job 42:10

Telling a person who is suffering, especially when the suffering is new, that they simply need more faith is not only unhelpful, but it can frustrate and depress the person even further. This is where more communication skill is needed. Be careful at this vulnerable time in this believer’s life that you are part of the solution and not part of the problem

“Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers.” Ephesians 4:29

Please share your comments, thoughts, and experiences here.  I’d love to hear from you.

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Life Beyond Surviving Memes

I have created a batch of memes to post on social media and in the Life Beyond Surviving group on Facebook. Some were created specifically for chronic illness and others were created as JoJoisms, but they fit this site too.

I don’t think most of them are posted anywhere on the site so I wanted to post a few of the best ones. You may find some you relate to.

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Dealing with Polly Positive Part two

Last week, I talked about why it’s impossible to be Polly Positive all the time and that it’s normal and even healthy to be negative at times. It’s normal to allow yourself time to be sad or angry, just don’t move there permanently.

Knowing this and doing it are two different things though because you have to learn to respond to Polly in one way or another. So, what is the best way to respond to Polly Positive when she strikes? How you choose to respond is going to be different depending upon your personality, your mood, and what was said, but I do have some ideas. It’s best to have a few options in mind for when brain fog or anger sets in. Here are a few ideas for you.

My best advice for times when something is said in passing or it’s someone new is to ignore. Silence is a great option because it requires little effort. It also doesn’t require any thought on your part and is a fairly quick resolution. I let the other person think what they want as long as I don’t need to expend any effort. This is my go-to option for when I’m tired, frustrated, or don’t really care what the other person thinks of me because I’m probably never going to see them again anyway.

Method number two is to gently remind. If I have more time, Polly is really pushing the issue, or she’s doing it in front of friends who are of the same opinion that it’s possible to be positive every moment of your life no matter what. “Everyone gets frustrated (or angry or down or sad) once in a while.” is a great response because most people would have to agree. “I just need to vent.” is another great one because most have felt this way too. “It’s not being negative to feel down once in a while; it’s only negative if you live there.” is another great one. Find something you feel comfortable with and have that at the ready just in case you happen upon Polly at some point.

Sometimes this can lead to a more lengthy discussion of what negative really means and if you’ve got the time and inclination to get into this discussion, by all means, do! However, there are times when it’s too taxing to get into it, especially if the one you’re talking to is just not willing to listen. It’s in these situations that I say something like, “If you dealt with all of the issues I have to, you might feel differently, but I just don’t have the energy to discuss it with you right now.”

Whenever I see a person who is unwilling to listen to reason, I deem that person toxic to my well being and I walk away from the situation or the person for a while or for good. This is an extreme situation and I don’t find this often, but it is an option you have. You should never feel that you need to put up with the stress of someone who is constantly berating you for not living up to whatever perfection they require. I haven’t had to use this technique too often, but I give myself permission to do so, if necessary.

My only caveat here is if that toxic person is a close relative or lives in your home. If that is the case, I suggest you ask them to put themselves in your shoes and/or have them go with you to your doctor’s appointment and have your doctor explain it to them.

*I do understand that there are still some doctors who don’t believe their patients. If that is the case, my prayers are with you.

What are things Polly has said to you that were unhelpful? How did you respond? How would you wish you had responded? How can that help you in the future?

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Dealing with Polly Positive Part One

The holidays are a time for getting together with friends and family. Many’s the awkward discussion I’ve had when I’ve been asked questions for which there was no acceptable answer.

So many well-meaning friends will tell you to just be positive, don’t speak negative into your life, and don’t complain. I’ve not found this helpful or biblical or sustainable or…healthy. While it is true that what we focus on we bring to our lives, nobody is able to be Polly Positive all the time and trying to do so leaves you frustrated, dejected, and that’s not very positive, is it?

What happens to you when you try to be Polly all the time? You see yourself as a failure because you can’t. You see more negative because it’s a knee-jerk, resentful reaction to Polly Positive’s comments. You begin to one up because you have a need to prove you have the right to be sad or angry. And you do!

You have every right to feel the way you feel. Chronic conditions are so frustrating and depressing because they are…wait for it…CHRONIC! It’s so much easier to deal with things when you know they’ll likely end in a while. I remember feeling awful when I had the flu for a few weeks, but I don’t recall feeling disillusioned with life. I knew that I just needed to wait a few more days or a week and I’d feel better.

Wanna know something else? Allowing yourself to be Negative Nelly and vent for a while, actually helps you to pick yourself up to Polly’s happiness level. Falling down isn’t fatal if you can find a way to pick yourself back up. Allowing yourself a time of grieving your loss of a healthy life isn’t fatal unless you live there and don’t let Polly tell you otherwise! I’d be willing to bet she’s had some negative moments she’s not talking about.

Next week I’ll share how you can answer Polly Positive.

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My Thanksgiving Story

Happy Thanksgiving, everyone! I saw this video on Facebook one day and it brought to me feelings of thankfulness in a way I had not yet expressed here on the Life Beyond Surviving blog, but there have been several miraculous things that have happened to each of my immediate family members that have made me thankful for my life, their lives, and many other seemingly ordinary things. First, here’s the video:

I began thanking God for every day things after He has spared me from cancer several years ago, but my family’s miracles began long before that.

About twenty years ago, my daughter was a very active figure skater competing in USFSA. One day she complained that it hurt when she breathed. We initially thought it was just very cold in the rink, but took her in to see a heart specialist who did some tests. My heart sank when he, personally, called me in the middle of the day to ask where she was. He told me to call the school and have them keep her off the playground and away from any physical activity because her ventricle was enlarged and any activity could result in a fatal heart attack.

We immediately began praying. I called everyone I knew and posted on social media for prayers for her. We were told that it was possible that she was born that way and would always have this issue or that it could have been the result of a virus from a cold she had two weeks prior. Even if it were the latter, it would be several months before she could skate or do any physical activity. A month later, she was miraculously healed!

In between my daughter’s and son’s birth, I had several miscarriages. One was very difficult due to the circumstances that I won’t share here. However, about 9 years after my daughter’s birth, I found myself pregnant with my son. In the first trimester, I began having the same issues as I did when I lost that previous child. I was terrified and on bedrest. One day I was looking in the mirror at my face which had two “birthmarks” (brown spots from when I was pregnant before that were supposed to disappear after pregnancy.) One was on the right side of my face from when my daughter was born and one on the left side from the last pregnancy. I noticed that the birthmark on the right side was getting bigger. I felt God assuring me that this was the right side. That this child would be ok because it was on the right side instead of the wrong side.

My son’s birth was a series of miracles, any of which, could have ended in his death or a life of being sickly. I won’t go into all the details as it’s a long story, but suffice it to say that God saved my second child too!

Many years later, my husband was promoted and required to move across the country to Indiana. My daughter was away at college, but my husband, son, and I all went to Indiana to find a home. On the way back to the airport, we had my husband’s uncle pick us up and take us to his house to visit before heading back home to prepare for the move. It was snowing and not too far from his house. The car slid a long way, became airborne over a tree that had fallen, and eventually flipped over leaving all four of us hanging upside down from our seatbelts.

My uncle-in-law had a cut on his face/head. I broke my hand in three places, and my husband broke his back. All four of us walked out of that car much to the amazement of the bystanders and the ambulance and police who were called. The doctor told my husband that if the break had been a hair off, either way, he would have been paralyzed. God saved my husband that day!

About three years ago, my doctor insisted that I undergo a procedure to determine if a large fibroid tumor was still there even though I was near enough to menopause that it was all but certainly gone. I would never have agreed to do it but since the insurance covered it, I said yes. They didn’t find the fibroid tumor, but they did find a solid cyst on my ovary. Since they can become cancerous, the surgeon said it and my ovary had to be removed.

While she was in there, she felt it prudent to remove my fallopian tube as well because “cancer likes to hide.” I received a call about my biopsy from the surgeon herself saying that they found precancerous cells in my fallopian tube. This rare and quite aggressive cancer is normally not discovered until it’s much too late for the woman to be cured. They scheduled a radical hysterectomy to make sure there was no more cancer hiding in there, but I was cancer-free before anyone ever even thought I might have cancer.

I’m thankful that God orchestrated things in such a way that all four of us are still here and walking around. I’m thankful for waking up. I’m thankful each of my family members wake up each day and for so much more!

Happy Thanksgiving! What are you thankful for? Any miracles of your own to report?

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Thankfulness Habit #4

So far, we’ve discussed looking for the joy that God surrounds us with, doing things we love or used to love, and using the internet to bring joy with friendships and fulfilling our purpose or showing our talents. This week, I’d like to share something very important as you find things to be thankful for each day. Give yourself permission to fail.

If you really can’t think or do something one day, two days, it’s ok. Start again tomorrow. Forgive yourself as God forgives us when we fail. And start again. Tomorrow is another day to make a fresh start. Each time you do, you will gain joy and strength and eventually a habit that sustains you in the darker times.

Sometimes it takes a while to find something you’ll be thankful you did in the future. Give yourself space to fail. If you try doing an activity you once loved and it just isn’t something you can do now or it’s no longer something that brings you joy, try something else. Some things are worth trying just so you know they aren’t what you need right now.

And then there are some things that you were meant to do for a time. I told you about how my For the Love of Purple page was taken from me by Facebook because I wasn’t able to prove I was me due to a glitch in Facebook’s site. I had run that page gleefully for almost ten years when this happened and I was upset at the time. However, after trying my best to recover it, I found that I felt it was time to move on.

For nearly ten years, my purple passion had not only made me happy, but it apparently got some women through some tough times. I had no idea what I was doing was bringing beauty into their world which allowed them to move forward after the death of their husbands or a divorce until I began getting messages from my fans. Just a little purple each day meant so much to them at such a hard time in their lives.

Well, that phase of my life was over, but I felt a calling to help support those going through chronic illness and that brings us to my blog and facebook group. You never know where God will lead you. I want you to remember that you can find joy inside your tunnel of trials if you look for them and work toward fulfilling a purpose even if it’s just texting a loving message to someone who is hurting or smiling at a stranger at your door.

What will you do? I’d love to hear your story!

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Thankfulness Habit #3

In the last two weeks, I’ve shared two tips for developing a habit of thankfulness. The first week I shared how to look for the joy all around you and last week I talked about bringing (or reintroducing) activities into your life that you find joyous. This week, I want to tell you about some new joys you can bring into your life.

If you can no longer do the things that brought you joy in your youth or you can’t think of any new things to do that will bring you joy. Can you make time online to do things that bring you joy? Most of us chronic folks have a hard time “doing” due to fatigue or pain, but there is one place most of us can go to find new joys and that is the internet. Whatever you think about the evils of the internet, you have to admit it has its merits.

You can do just about anything online these days including banking, gift buying, and even working. But the one thing most of us crave is interaction. The worldwide web hosts a great deal of sites in which even we, who are housebound, can go to find friendship, support, information, and distraction.

Social media is a great way for the chronically ill to socialize as well as find support, understanding, and fun! Facebook is my go-to social media site. Not only do I have over 1000 friends to share my life and experiences with, but I have several wonderful groups that support various issues I deal with. These are my people. These are the ones who understand me, who don’t ask silly questions or give me unsolicited advice. It’s also the place I can interact with my IRL (In Real Life) friends and family who live too far for me to visit with in person.

If you find yourself an empty nester or living away from family or you just can’t get out much, social media and other internet social sites are a great way to connect to others who you’ll find yourself being thankful for when you count your blessings each day.

If you’re an artist, you can display your creations on social media or on your own blog. The same is true if you’re a writer like me. You can share your insights or your stories on social media or on your own blog like this one.

The internet affords us many opportunities that allow us to be connected and use our talents without having to leave our homes. Is there any work you can do from home like writing, internet marketing, internet sales, blogging, or even a regular job you can do from home. Many companies now are hiring people to work from home. Look into things that might allow you to be productive from home given your limitations.

One last thing I wanted to mention is starting a Facebook or Reddit group. I had a very successful fan page on Facebook for purple lovers. I didn’t make any money from it. I just brought some joy to other purple lovers like me. Unfortunately, I built it to over 8500 people but I didn’t have a moderator or another admin as it turns out I should have.

Facebook started a new procedure where they demand you prove you’re you or they take away your admin status. There is some kind of glitch in their system that didn’t allow me to do that and so I am no longer admin on my For the Love of Purple page. If I did it over again, I’d have a few moderators who could reinstate me.

I now spend my time running Life Beyond Surviving Facebook group and am content to leave For the Love of Purple fan page behind me. It continues to grow without me and is now almost at 10,000 fans.

Whatever it is that brings you joy, purpose, or inspiration, challenge yourself to do it daily. The internet is a wonderous place to display your talents, serve others, or display your passion. What can you use the internet to bring you joy and fulfill your purpose? Think about it.

Next week, is my last article in this series so stay tuned!