JoJo: A Space Oddity

I probably have over 2001 ways in which my life is odd. If the previous blog posts on how things work on my planet and living the weird life haven’t convinced you, I have three more areas of my life in which to express, JoJo: A Space Oddity, and it’s on the topics of exercise, parenting, and my testimony.

Again, my intention is to let you all know that it’s ok not to be like everyone else. It’s ok if your chronic issue doesn’t manifest itself in the same way as most others or you have a different way of dealing with it because you are a unique child of God. It’s ok to be you, even if most people don’t understand!

Exercise Weirdness:
One of the things that has always gotten in the way of my losing weight is what I came to find is called Exercise Intolerance. Now, I’m not saying that I don’t like to exercise but I don’t. Almost nobody does. What I’m talking about is the weird reaction of my body that even if I start slow and build slower, instead of the exercise getting easier (because my body adjusts or gets used to it or gets more in shape), the way it works on my planet is that it gets harder and harder for me to complete until I can no longer do what was fairly easy for me at the beginning.

Now, I know this makes no sense whatsoever, but it is true. I’ve tried it many times in my life. And lest you think this is something that is a result of years of a sedentary lifestyle, I have to tell you that the first time I noticed this was when I was about 17 years old and a senior in high school. Yup, you read that right. At the age of 17 walking about a mile or so to school and back, I would come home from school and be absolutely exhausted. It never got better.

During this time, as I mentioned previously, I was put on The Pill and gained 30lbs in a month. I decided to do two back-to-back aerobics tv shows before school in an attempt to lose that weight. It started out ok. I was able to finish the workout and felt alright afterward, but by the eighth month, I couldn’t get up off the floor to take a shower and get to school. That’s when I had to quit…and I never lost an ounce!

In the following forty years, I tried countless exercise routines that all resulted in the same pattern. It was a bit difficult at the start, but as time went on, I found the very same exercise more and more exhausting until I was forced to quit. After reading a few articles on Fibro, I found the term Exercise Intolerance associated with some Fibro patients. Most of the Fibro folks I know don’t have this, but they do understand having days when working out or even walking was too much.

Parenting Oddities:
This area of my life is what my father would call “wackadinghoy” and is actually three parts of the parenting equation. To be fair, two of them are much more unusual than the third, but the third is still not mainstream.

Parenting begins with birth and what describes both of mine is, of course, the word weird. When I was pregnant with my first child, I was expecting everything to go according to plan and, for the most part, the pregnancy was nothing that deviated from my expectations. However, the birth was slightly more dramatic than I was anticipating.

I was told my first child would be marked by my body’s unfamiliarity with the birth process and so a slow, long (maybe 18-20 hour) labor was expected. I got to the hospital when my contractions were getting closer but they were never five minutes apart. They went from more “occasional” to two minutes apart. When I got there, I was told that the doctor was called and was on her way. However, my expected 20 hours of labor turned out to be only nine hours long. When it came time for my daughter’s arrival, the doctor hadn’t arrived yet. The nurse had left the room and told my husband to call her when I felt the urge to push.

Well, as soon as she disappeared down the hall, I felt that urge only the nurse didn’t believe my husband when he told her. I reiterated my feelings with a bit more force than I had the first time and she came back in the room to find I was dilated and almost ready to go. Long story short, the doctor arrived JUST in time to do her part and catch my daughter on the way into the world.

For several years thereafter, I was certain I was pregnant several times only to find that I probably had a miscarriage. Five years after my daughter, I had a horrible miscarriage. I won’t go into the details here, but it was my only confirmed miscarriage and the details of that miscarriage were odd in ways I don’t want to go into in print.

When I was pregnant with my son, I began having similar symptoms as with my miscarriage and was ordered bed rest for several weeks. I prayed that this child would be born healthy. I was washing up one day looking into the mirror and noticed something different about what the doctors called a “birthmark” on my right cheek.

It originally made its appearance when I was pregnant with my daughter and was supposed to have disappeared after she was born, but it never did. The one on my left cheek was much smaller (I think because that child miscarried and it didn’t have enough time to grow larger as the pregnancy progressed). What hit me was that the one on the right was MUCH bigger than it had been before.

I felt God speak peace to me that day. I felt that the right side was the RIGHT side. The children whose mark was on the right side were to live and I had a peace come over me knowing that somehow this child would be okay.

My son was born more than nine years after my daughter. As a second time mom that far apart, I was told that my body wouldn’t remember what to do and it was more than likely that I would be in labor for about 20 hours. This time, though, we lived quite a ways from the hospital and in rush hour traffic that translated to my son almost being born on the freeway.

I got into my gown and the hospital bed just when he was about to make his arrival, but there was no available doctor in the entire hospital. Fortunately, nurses are amazing! He was born only halfway when labor just stopped. They found baby’s first poop all over his face, in his mouth and nose. This meant that, if he was born the rest of the way and began to take a breath, he would likely either be sickly all his life or could even die.

Nurses worked quickly to get all of it out of his mouth and nose before the Lord saw fit to have his other half delivered and he took his first breath. And he’s amazingly healthy to this day! He was the talk of the hospital on our way out as my entire labor with him was three hours and fifteen minutes!

Having two only-children is somewhat odd. I’d arrive with my daughter, nine, and my son, newborn, and people would automatically think that this was my child from a second marriage or that I had other children at home. When my daughter would hold him for me, she was met with stares and one particular woman who felt the need to chastise her for being an unwed mother! …She was NINE!

Another rather unusual parental discussion we made was about vaccinations. Our daughter was vaccinated because we didn’t feel we had enough information to decide not to do so at the time (though she didn’t have any booster shots). We did more research and felt strongly that we shouldn’t vaccinate our son. Talking about this subject usually requires a bit of explanation because of the next part of our childrens’ stories.

Both of our children are exceptionally bright. Our daughter learned to read quite young and used to read the dictionary for fun. Our son taught himself to read at the age of three using Jump Start Third Grade on the computer. While my daughter’s intelligence manifested as having different interests than most of her friends, my son’s intelligence was tempered with several sensory issues that we later found was due to a form of Autism that used to be called Asperger’s.

Another parental issue we dealt with was a direct result of the intelligence of our kids. We chose to homeschool my daughter after her 4th-grade year in a private school in order to better teach to her advanced educational needs. Later we found that our son’s educational needs included movement that wouldn’t work in a traditional classroom.

I have so many funny and poignant stories about our homeschooling experiences, but I would love to share a short story of a time when we lived in California and a cable guy came who didn’t believe homeschooling was legal or a real choice. His wife was a public school teacher and he began quizzing my daughter. He fired questions at her and she answered each one with ease and a tad of smugness until the third question or so when she fired back the answer to a math question that even he didn’t know the answer to!

My Testimony:
One last way in which my life is a bit odd is the way in which I came to the saving knowledge of Jesus. Mine is another long story, but here’s the reader’s digest version: I was born to Atheist parents of Jewish heritage, but I never believed there was no God. I married a nonpracticing Catholic and became a non-denominational Christian due, in part, to some Amway meetings and a Jehovah’s Witness that came to my door.

I always thought everyone had a Come to Jesus moment and that it happened like this: Bob was a drug addict and reached his lowest point when someone told him about Jesus. Light from heaven came down upon him, God spoke, and, in the blink of an eye: BAM! Bob’s life was changed! That’s the way it seemed to happen in the movies anyway.

I was more of a goody-two-shoes. I never did drugs, didn’t drink, didn’t skip school. I just always felt there was more to life. Even before I was told about Jesus, I always felt there was someone watching over me. I couldn’t really explain it and I never really told anyone, but I did ask everyone I knew what they believed about God and why.

One day Grace came to my door and asked me about life after this world. I was intrigued and she kept coming back. One day she asked me if she could come in and talk and I said sure. That went on for weeks or months until she asked me to come to her Kingdom Hall. I declined as some of what she believed made sense to me but other things didn’t.

As I began to share this with my husband, we decided to attend a Calvery Chappel church in our area that was pastored by Raul Reis, and, in a short time, both of us accepted Jesus as our personal Savoir.

Anyone else relate to my any of this? Any other unusual birth stories? Homeschool stories? Do you have an unusual Come to Jesus Moment? If you didn’t find something you related to so far, I have some more weirdities coming your way next week!

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2020: Back to Basics

I thought I’d start off this year getting back to basics. However, in case you’re just joining me at Life Beyond Surviving here in 2020, I thought I’d start at the beginning of how and why I started this blog. I’ve always sought to be understood because I’ve never been able to fit in with the crowd. My life has always been a bit quirky. I guess you could say I’m not your average Jo…Jo!

I’ve always been different, weird if you will. So, I understand how important it is to be supported for who you are and the different circumstances you find yourself in. That is the essence of chronic illness, isn’t it? We don’t feel most people get us. Sometimes when you have been through so much you find yourself asking God why. Why me? Why so much hardship? Why can’t I just be normal?

Why? In my case, I think it’s because I can help others…and I have never been normal…

I’m only 5′ tall, wearing children’s shoes, hats, and gloves. I used to sit on a telephone book in order to see over the steering wheel.

I was born to Atheists of Jewish descent, married a nonpracticing Catholic and became a nondenominational Christian because of Amway meetings and a Jehovah’s Witness that came to my door.

I’m an older mom having had my first at 27 and my second and last child at 36. I didn’t vaccinate my son though I did my daughter. Both my kids are incredibly intelligent. My son is that as well as Autistic or what they used to call Asperger’s.

I chose to homeschool my kids and for seventeen years we fielded all sorts of questions about socialization and getting into college. In case you’re wondering, they both were able to hold their own during the inevitable inquisitions from cable guys to relatives and went on to elite universities.

I’m weird in my medical history as well. Having had Fibro since I was a teenager and several other issues shortly after giving birth to my son at 37, I’m all too familiar with the misunderstandings that chronic illness has in the general community.

In addition to Fibro, I’ve struggled with perimenopause hot flashes for over twenty years. I also have Essential Tremors, Arthritis, Osteoporosis, and I can’t even remember all the rest. In addition, I’ve had nine surgeries in my lifetime. Five of them in a 2.5 year period of time including one due to cancer.

I’ve been married 33 years. I’ve been a mom for 30 years, I homeschooled for 17 years and I’ve had chronic illnesses spanning most of my life. I have a wealth of knowledge about several topics and how to do them with chronic illness.

But do not forget to do good and to share, for with such sacrifices God is well pleased. ” -Hebrews 13:16

My heart is to share my knowledge and support others who are struggling with chronic conditions. My mission is to help them see the joy, the light, God’s light not just at the end of a tunnel (trial) they might be going through, but INside the tunnel (during the trials that are so long they don’t end this side of heaven).

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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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Sometimes You Need a Pity Party

cry baby partyI don’t think you’d be human if you were sunshine and roses every day, especially in the face of chronic struggles and hardships.  However, some will tell you-you’re not a good Christian if you share that you are depressed or upset or frustrated.  It’s not like the Lord doesn’t know you feel this way. It hasn’t escaped His notice.  It’s not a sin to be angry or sad or frustrated with your situation.  It’s only destructive if you stay there.  It can actually be quite therapeutic to throw yourself a little pity party now and again.

I think the only people who don’t ever go down deep in the valley of despair are those who don’t have any problems. Know any people without any problems?  Me neither!

So when you are exhausted just after getting up in the morning, you go looking for your sandwich in the closet, your electric bill is past due and you have only two nickels to rub together…AGAIN, you will enter that valley.  What you do there and how long you stay will determine your quality of life and the joy you find in spite of it all.

The value of a pity party:

Allow yourself time to grieve and/or express your negative emotions so you can move on.  Without a pity party, some find it difficult to gather the strength to move on to life’s next chronic hurdle because they haven’t dealt with the previous one.  Making time to express your anger, sadness or frustration can help you get rid of those feelings.

What to do at your pity party:

Invite people to your pity party.  You don’t have to send out formal invitations or anything, but fellowship with one or two trusted, Christian friends or family members who understand what it feels like to deal with the issues you are struggling with.  They will not only understand and allow you to vent but lead you back out of the valley of despair and back to the Lord.  They can help by validating your feelings so you aren’t concentrating your energy on justifying why you feel the way you do.  You have a right to your feelings.  You don’t have to marry them, but you have a right to them as you come by them honestly.

Play Woe is Me.  Express how you feel and allow that trusted friend or family member to see the real you–even if it isn’t pretty right now.  It’s your party and you’ll cry if you want to so…cry if you want to!  You’ll feel better afterward.

Allow friends or family to lift you up.  I know.  It’s frustrating to make one single statement and have well-meaning Christians immediately jump all over you about not being positive and tell you just to cheer up.  But once you’ve had a good cry (or scream as the case may be), you need to be lifted up out of the valley or you’ll be tempted to stay there.  And trust me, pity parties are a nice place to visit, but you don’t want to live there!  Your friends want to help.  Let them.

What to do after your pity party:

Have some FUN!  Here are a few ideas.  Go for a walk, see the beauty God put on this earth.  See the humor in your situation and poke fun at yourself. Lift someone else’s spirits.  Make someone laugh.  Concentrate on someone else’s problems for a while and try to help.  It’s amazing how focusing on others will draw you out of the pit you’ve fallen into.  Write about it.  Sing about it.  Hug your blessings…better known as your children.  Hug someone else’s children.  LOL

Pray.  Pray that God would take this from you and, if God doesn’t take the struggle away, pray that He would use it, your experience and you to lift someone else up.

Lastly, thank God.  Thank the good Lord for the good things in your life.  Count your blessings.  You have some!  Even in the lowest pit of despair, you have some blessings you can count.  If your dishwasher broke and you can’t afford to fix it, you can thank God your water bill is paid this month and you can afford dish liquid.  If you are so tired you can’t get up out of bed, thank Him for the bed you have.  If your pain level is high, thank Him for the life you have and the chance you have today to perhaps find your answers. Maybe you’ll discover something that helps you.  Maybe you’ll discover a $20 bill in the couch that will pay for a few groceries.  I know, I’ve looked there a time or two as well!

But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us.  We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair;  persecuted, but not forsaken; struck down, but not destroyed”—  2 Corinthians 4:7-9

I pray this has been helpful and uplifting. Please leave me some feedback in a comment.  Share your story.  Tell me what you’d like to see in the coming weeks as I share.  And please pass this post along to others who may need to start planning their own pity party.  😀

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