Living The Weird Life

So, last week, I shared with you all the ways (at least all I could remember) in which life is different on my planet. I hope that you found some comfort in the fact that there is at least one other weirdo out there whose physical characteristics don’t match the norm. Well, I’m not done yet! Hold onto your child-sized hat because, if you didn’t relate to anything I shared last week, you might relate to something here.

Middle Name-less:
When I was in grade school, everyone always asked your middle name. I don’t actually have one, but that wasn’t a very common answer so most of the kids assumed my middle name was so awful that I couldn’t even admit to having one! As I shared last week, most of my incredible height is in my legs so I have always joked that, at 5′ nuthin’, I just don’t have much of a middle.

Where Are You From Conundrum:
Having moved around a lot as a child (and also as an adult), answering the question, “Where are you from?” always sent me into a tizzy. I’ve linked to my original post on this, but suffice it to say, where I was born, where I moved here from, where I spent most of my childhood, and where I grew up are all separate long stories.

Not in the Mood for Food:
I don’t like food much. I don’t like cooking it, seeing it, smelling it, and I don’t especially like the taste of most foods. In fact, if someone would invent a pill that would keep you alive without requiring you to eat, I’d sign up. That being said, NO, I’ve not been thin all my life….and isn’t that incredibly frustrating?!

Hormone Wackadoodles:
When I was a teen, my monthly cycle landed me in bed five days out of every month with excruciating pain so bad I was sick to my stomach. I was put on The Pill and gained 30 lbs in a month’s time! Now, for someone of my slight size, that’s a LOT! I tried everything to lose weight but it never worked. Finally, after being put on a different version of The Pill, I lost the entire 30lbs in one month through no work of my own. I’ll go into what I tried and how that DIDN’T work for me in greater detail later on.

After having my 2nd child in my later 30s, I began the fun and exciting process of peri-menopause! Oh yay!!! Each year I gained just a little bit of weight that no diet or exercise would reverse.

Finally, about a year after my total hysterectomy, I really piled on the pounds. I found a lovely lady who is a health coach who has been able to guide me in losing over 12lbs and 16 inches thus far. But it hasn’t been without its own weirdities. My body doesn’t react to things like most Earthlings. She’s had to tweak my program many times. If you find that you’re weird in this way or would like some help losing weight with some guidance for health concerns, let me know and I’ll put you in touch with Mary!

Hot Flash Happenings:
What also began after my last child was born is the dreaded Hot Flashes! Mine were high octane ones that began in my midsection deep inside and spread outward over my upper body. The heat fogged car windows and the sweat caused me to have to change my pjs three times a night! My ears even turn beat red and burned like pins and needles.

I once exited a Walmart wearing a tank top and fanning myself during a snow storm. The guy and his young son gave me a look like I was from outer space and now you know he’s not wrong. This is just how things work on my planet!

I’ve always felt that a Space Stork must have brought me here from another galaxy cuz my body doesn’t work like everyone else’s here on Earth. For one thing, I was told that peri-menopause is a ten-year process of which the woman only feels mild to moderate hot flashes for the last two or three years. I beg to differ. I was also told that, while natural menopause leaves the average woman with hot flashes for a few years, surgical menopause has most women experience worse hot flashes but only for six months. I call poppycock! I’m 57 and this stage women go through has now become a lifestyle. Yay me!

Weird Wrinkles:
Now here’s a really bizarre one for you. I almost always have wrinkled fingertips. I’ve read that this can indicate that one is dehydrated. And at most times in my life, you’d be correct. I don’t like most drinks and I only tolerate water if it’s freezing cold and plain without added lemon or flavorings as it just tastes like watered down fruit juice to me.

However, does anyone out there have fingertips that get MORE wrinkled the more you drink water? And I feel drier the more water I drink. I’ve been like this most of my life and I’ve shared this with several doctors and all over social media. I’ve Googled it too and came up with bupkis. Anyone out there have this little gem?

Bifocals Bye Focals:
In my early thirties, I began having problems reading and got my first pair of bifocal lenses. At the time, the optometrist told me it would take a few days or a week to get used to glasses with bifocals. Several weeks later I came back because not only was I not used to them, but I couldn’t read with them on. I had to take them off. You see, bifocals don’t work for people from my world!

I’ve had a few prescriptions from different optometrists in different states and none of them work for me. I have to take off my glasses and bring the paper up close to read. And, as I age, the small print has left me squinting or asking my son to read the directions on the Rice A Roni box!

Turn Blue!:
You know how kids say, “Turn Blue!” when they are mad? Well, my hands do. My hands turn blue sometimes when I am cold and also turn red sometimes when I have a hot flash. Sometimes my feet are freezing and my hands are blue even WHILE I’M HAVING A HOT FLASH! And what’s THAT all about?

Smelling Smoke That isn’t There:
Ever since I was a little girl, I’ve hated the smell of cigarette smoke. My dad used to smoke 3.5 packs a day. He’d wake up early and start smoking downstairs til I could smell it upstairs even with my door closed. Later on, I noticed that I could smell cigarette smoke coming from three cars ahead of me on the road.

I began noticing that my throat would feel like it closed up when I smelled smoke of any kind–even from the toaster or when making a tortilla over the burner flame. Now, I smell smoke that isn’t even there!

Just Say No to Yoga:
Shortly after my hysterectomy and gaining weight, one of the exercises I tried was Yoga. Simple stretching and low impact sounded good til I put my head down below heart and got light-headed! Any bending over to where I put my head below my heart for longer than a minute or sometimes less, will leave me feeling so light-headed I can’t do anything for a while.

Well, that’s some more of the weird issues I have. Any of those ring a bell for you? Anything similar? I hope that helps you feel just a bit less like an alien among earthlings, but if not, I’ve got more coming next week!

This is how life works on my planet

I can’t even count how many times in my life I’ve felt like a weirdo, an oddball, an outsider. I’ve been unique all my life. When I was a kid, I moved from the East Coast to California and got some of the strangest looks when, in my NY accent, I called jeans, “dungarees” and pronounced Sepulveda (SePULveda) Blvd, “SepulVEda.”

Some years later, I began to notice that I was a medical oddity. But recently, I began thinking that I can’t be the only one the Space Stork dropped off on this planet from another galaxy! I can’t be the only one who feels like nobody understands her.

I’m willing to bet that many of you have felt like an outsider even among those who have the same diagnosis, but you’ve been, like me, afraid to call too much attention to your weirdness because nobody you have ever met has been like you. Well, it suddenly dawned on me last month that it might do us all some good to reveal our weirdness because we’d come to find that there is strength and comfort in the fact that there are other people out there who have struggles nobody else seems to understand! Even if my weirdness isn’t the same brand as yours, there will be some benefit to you if I reveal that…I’m so weird, I make weird people look normal!

With that said, here is the beginning of my five-part series on how things work on my planet. At the end of each article, I’m going to ask you if you can relate at all. I’d love it if you’d respond by sharing here on the blog if you can relate to something I’ve said or if there is something similar that you haven’t seen in most people with your issues. Maybe something the doctors don’t even get. I’ll bet someone out there needs to hear what you have to say as much as you need to know you’re not as much of a weirdo as you think you are and someone else out there understands. ME!

Let’s start at the beginning, shall we? Just looking at me, most folks can tell right off the bat that I’m not your average Jo…Jo.

Teeny Tiny JoJo:
I stand before you all of 5′ nuthin’ with a toddler-sized head and child-sized hands and feet. Yes, I actually wear a children’s size 3 shoe and children’s gloves. Small hands mean I have trouble opening jars, not as much because they are too tight, but because I can’t get my tiny hands to grip the big jar lid!

Though I’m small in total, I’m particularly small when I sit because most of my incredible height is in my legs. Sitting down, I look like an elementary school kid (from a distance of course). This means I drive with the seat in what my husband calls Midget Mode and I still have trouble seeing over the steering wheel.

In other midget news, I have to stand on a step stool to cook on the stove, I can’t reach the showerhead and I’ve been known to have my face up to the glass so the water doesn’t go over my head. My feet don’t touch the floor when I sit on most couches. If I sit back, my feet not only dangle but may resemble Lily Tomlin’s character, Edith Ann, a three-year-old in an oversized adult’s chair.

Fist of NON-Fury:
Short stature is only one of my physical oddities. A few years ago, I was involved in a rollover car accident in which I crushed my left hand. Broke it in three places such that now, when I make a fist, my middle finger crosses over my ring finger in a tender embrace. I had to relearn how to type after this. It took me about six months to a year for it to become natural for my middle finger to move where I wanted it to go despite its insistence upon diverting left. This also makes snapping my fingers impossible on that hand (which, although it’s been a few years now, I still forget I can’t do).

Hair Today, Gone to Sorrow:
My hair has always been a source of frustration for me. Not that most women don’t find their own hair frustrating, but mine has a unique ability to do just the opposite of what is “In Style” at the time. When curly hair or big hair (80s) was in style, mine was stick-straight and refused to curl no matter what kind of pin curls or rollers I used.

Now that straight hair is the style, my hair has decided it’s time to get CRAZY! After my miscarriage in 1995, my hair began to curly cue up. It’s not even just curly anymore. Left to its own devices, it looks kind of like Shirley Temple stuck her finger in a light socket.

It’s a bit frustrating when it comes time for hair cuts. Nobody knows how to cut curly hair. I recently found a stylist who went to NY to become certified in curly hair! She’s the only one, in recent years, who I trust to cut this ragga mop of mine.

Scar Wars:
To add insult to all of my injuries, I scar very easily. After one of my nine surgeries, my poor ENT was a bit shocked (and afraid I’d be mad) that my parathyroid scar on my neck was so dark and thick when it should have been virtually invisible at that point. I told her not to worry. It’s just JoJo skin. I once had a test in the hospital where I was about to have my first surgery for a cyst on my wrist. They pricked me with a white plastic strip that had two pins on the ends to see how long it took me to stop bleeding. That bubbled up and became a thick scar that is still visible some 40 years later!

Miscellaneous:
I’ve always been flexible beyond measure due to loose ligaments. I have two brown spots on my cheeks that were supposed to go away after I gave birth. Nail polish doesn’t stick to my nails because of the deep ridges. And my ears don’t match! I’m sure there’s more but you get the idea.

Okay, so anyone out there in Internetland relate to any of this? Anybody else weird in any of these particular ways? Similar ways? Does this help you feel a bit more comfort with your own brand of weirdness? If not, keep reading next week. I’ve got more ways I’m weird than I have fingers that work. Stay tuned.

Ma Ma Ma, My Corona!

A little humor that resulted from the Coronavirus. Here’s the good, the joy, and the humor that came to help us cope with life during COVID19:

Here’s just a little humor I created for April Fool’s Day:

This guy cracks me up!!

A little Do Re Mi Covid Style!

Hope you enjoyed all the giggles! Stay safe, everyone!

Doing Time: Life on the Inside…of Chronic Illness

No series on COVID19 and Chronic Illness would be complete without pointing out the differences between what most will experience as social distancing and what we, who struggle with chronic conditions, deal with.

You’re not sick:
Many of you who are dealing with limiting your social interactions and confining yourselves to your homes don’t also have to deal with having chronic pain or fatigue or a host of other issues that go along with our everyday life dealing with illness. You’re free to spend your time cleaning, reorganizing, cooking, exercising, or a myriad of other activities that we find exhausting.

Many of us find that we are doing even more activity as our children are home from school and our spouses are home full time. This means more laundry, more cooking, more dishes, more cleaning, and thus, more pain and more fatigue than we usually deal with.

You’re not sentenced to life:
Your incarceration is short term. However long you think endless social distancing means, it’s likely much shorter than we who have been on the inside already. In the past few yrs, I’ve been home alone most of the time until my husband came home from work (which was often pretty late) or my son had been home on spring or summer break (which he had to spend some amount of time attending to his own life) or when we went to church or out to dinner on the weekend.

Most of us with chronic issues have spent months or years at a time alone or without the ability to leave our homes. As so many on social media had been pointing out Anne Frank and her family’s isolation, we who have chronic illness, have experienced this to a great degree first hand.

Others will understand:
As you face time sequestered in your homes, many others who have to do the same understand what that means for you. You have friends and family who “get it.” We don’t. Most of our friends and family have no idea what it means to be alone in our homes for years. Or what it means to be fatigued or in pain on a chronic level. You can commiserate with others. We don’t usually have that luxury unless we come together with other fellow chronic illness sufferers online.

You’ll get back to normal one day:
One day soon, Coronavirus will be handled and life will go on about as it has been prior for most people. However, the very nature of chronic illness is the chronic part. It means there is no cure at present. There is no parole for good behavior. Our sentence will not be commuted and we will likely only get worse with age.

A small percentage of people with one chronic issue will only have one chronic issue in their lives, but most of us have been collecting diagnoses like some collect stamps. I, myself, have several chronic illnesses and conditions to contend with.

You may have economic difficulties that last well beyond the time when we will no longer be confined to our homes, but there will be those that understand and will make allowances. There already have been. Many companies are not requiring payments for a while. Some landlords have told businesses to pay their employees before the rent. Most universities are being lenient with grading. Most employers will understand and not hold it against you if you were unemployed for a while. The government is sending out checks for relief.

Most employers and most people don’t understand what it means to have been isolated for years due to chronic illness. Most of us with chronic illness have a large debt due to medical bills. That’s not something widely understood.

You’ll get back to normal one day. We will still be here.

Chronic Illness: Better Prepared to Handle Social Distancing or Overwhelmed Enough as it Is?

I was thinking a lot about how those of us with chronic illnesses have had to socially distance ourselves for one reason or another over the course of time. It got me thinking. In some ways, we are more prepared for the social distancing of COVID19. However, in other ways, we are already stretched thin and the added difficulties arising from Coronavirus could overwhelm us and put us over our tipping point.

So I asked myself, “Are we better prepared for social distancing than our non-chronically ill neighbors or are we isolated enough and overwhelmed as it is?” I’m still not sure, but here are some of the things that weighed in:

How We are More Prepared:

  • Those of us dealing with chronic illness may be more prepared for being socially distant because we are used to it.
  • We have all kinds of different limitations (health/mobility/solitude),
  • We are used to relying upon other people
  • used to relying upon God

How we are already overwhelmed:

  • Now those once a week activities that helped keep us sane are gone.
  • The people we used to rely upon are no longer able to visit
  • Now others are also now relying upon us more such as our children and spouses since they are home all day.
  • Our limitations may be the thing that broke the camel’s back to overwhelmed.
  • Now with so much out of our control, we feel like too much is out of our control: overwhelmed.

What about you? Do you feel more or less able to handle the COVID19 social distancing?

Social Distancing: Tips from the Experts!

Many of us with chronic illness have been socially distancing ourselves for quite a while now. We have been doing it because we are either too tired or in too much pain to make it to social events. Speaking for myself, I have often been too tired to go visit people and my Essential Tremors make it difficult for me to drive so I have been mostly alone in the house for at least a few years.

Those of us with chronic illness often feel we have nothing to offer others. However, what we know about coping with social distancing could fill a blog post and so here it is!

I’ve put together a list for you and I asked my Life Beyond Surviving group members to weigh in on this and here’s what they said to those who are struggling with social distancing during COVID19:

Since I cannot go out much, I have found social media invaluable for keeping in touch and connecting with others. Reach out to others online who have similar interests and discuss them, share your ideas and your creations with others. I do this by sharing my humorous JoJoisms on social media and in my groups.

“To keep in contact with family and friends, we’ve been using a lot of FaceTime, Google Duo, and the video option on Facebook messenger.” -Amanda O.

A great way to keep in touch with family and friends is by phone. Now that everyone is at home and fewer are working (or are working from home), you can reach out to family on the phone. Want to see their faces? Do Zoom calls with family or friends!

Develop hobbies (Reading, painting, crochet, knitting, needlework, coloring, dancing freestyle to music), learn to enjoy silent times of peace and quiet reflection, enjoy music, movies, have a routine, do certain things on set days still not just through each day, reach out, do some sort of physical activity if it’s stretching, walking or exercises, Livestream tv and movies, FaceTime or video chat, Facebook lives, declutter your house, cook and freeze meals ahead, read stories to kids in person or record and send to them.” -Angela W.

Watch some educational things on YouTube or some documentaries on TV. Get closer to family now that you are spending more time with them (if you are) and why not do Movie Nights with popcorn like a theater!

Don’t sit for more than about 45mins, set a timer if you need to and get up and move around, get a glass of water. Set out healthy snacks for the day, plan your meals, add in some treats!” – Amy W.

Have small children? Check out some fun crafts or games online to do at home! Have games in the backyard. Do puzzles. Spend quality time!

Gargle with warm salt water, especially after being out and up your vitamin c. Make sure you get out and exercise.cleaning, reading. I talk to my daughters through the Facebook chats. Listen to my Spotify music list.” – Cynthia P.

One thing I love to do is to minister to others. Why not help someone. For example, text an inspirational message each day to someone who is needing some joy. Post the beauty of God’s world or scripture on social media or text or share it over the phone.

Reading, writing snail mail, and doing virtual field trips. I am traveling via shows, virtual tours of various places I had dreamed of going to. My husband and I are listening to various music via Concerts on TV, on YouTube, Instagram. There are live streams of symphonies, ballet companies, dance shows, etc… Our son clued me in, that you can find some Broadway Shows on various platforms! I felt isolated but truly, the world is available to me! I feel blessed.” – Becky P.

I hope that helps you all out there! Please share this post and leave a comment on the blog with any ideas you have!

Six Things God Uses to Encourage Part 5

This week we’re wrapping up my series based on the Six Things God Uses to Encourage in one of the sermons by Charles Stanley. We’ve talked about God’s Word, Music and Fellowship, Thankfulness, and Humor. This week, I’d like to talk about the last one, Prayer.

Prayer isn’t just a way to communicate with the Father, but it can be a way in which He encourages us. This is especially important when we are struggling in trial–particularly a trial that is chronic.

Not only can we pray to the Creator when we are in need, but we can pray to commune with the Lord to hear His voice that will guide us and encourage us not to give up and that He allows the things He does for a higher purpose. Knowing this can help us to accept things that we cannot change, keep strong for things we can change, and encourage us along the way no matter what is going on because our home is not of this earth but in Heaven.

It may be hard to feel the Lord near to you when you’re in the midst of a trial, but the more you look around and see all He has put here for you to encourage you, the more you will feel Him near and that is a HUGE encouragement!

For this reason, I encourage the Life Beyond Surviving Facebook group to share their prayer requests each Sunday (and at any time a member has a need). Sunday is already a day of rest and to commune with the Lord so Sundays are a day we pray for each other on the group.

If you are on Facebook and would like to join us, we’d love to fellowship and pray with you. I pray you have found some encouragement from this series.

Six Things God Uses to Encourage Part 4

We’ve been exploring six ways in which the Lord encourages those of us with chronic illness/conditions. We’ve discussed the Word of God, Music, Fellowship, and Thankfulness. This week, I’d like to talk about Humor!

I have always loved humor. It’s become part of my personality. I even enjoy the dreaded pun and I adore making others laugh. What I discovered is that the more difficulties I face, the more important humor is to me. It has a way of disarming the anxiety and adding lightheartedness to an otherwise dreary day of fatigue and pain. Humor has gotten me through a ton of difficulties as I’ve found that God usually hides a little humor inside the struggle.

“A cheerful heart is a good medicine.”—Proverbs 17:22

I didn’t realize it until I started looking, but there is a lot of humor in the Bible. God invented humor as a release, a way of teaching, and a way of coping with the difficult things in our lives. I read a great article about how God uses humor in His Word.

Here’s are a couple of passages from that article:

“But I think Hebrews 11:12 is the funniest verse in the Bible: ‘Therefore there was born even of [Abraham], and him as good as dead at that, as many descendants as the stars in heaven …’ (emphasis mine, NASB).”

“Of course God’s humor is never cruel the way humans twist it to be at times. In fact, God is entirely pure and untainted, thus so is his humor. Such a God inspired the author of Proverbs to write, “A happy heart makes the face cheerful” (15:13), or seen from the opposite point of view in verse 30, “A cheerful look brings joy to the heart.” Proverbs 16:24 says, “Pleasant words are a honeycomb, sweet to the soul and healing to the bones.” Aren’t you glad?”

This is why I share humor and create funny memes to share here and on my Facebook group, Life Beyond Surviving.

Humor is a gift God gives us to help us through the difficult times. What humor have you found hidden inside your struggles?

Come back again next week when I’ll share about how prayer is another thing that God gives us to encourage us.

Six Things God Uses to Encourage Part 3

God uses six things to encourage us and, so far this month, we’ve looked at God’s Word, music, and Fellowship. This week, I’d like to talk about thankfulness.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God;” -Philippians 4:6

It sounds counterintuitive to say that in the midst of great suffering we should be thankful, but it does help. First of all, we are not thankful for suffering, but we may be thankful that our suffering brings understanding of other. We may be thankful that we can now understand enough to help others. We may be thankful that we will grow from this experience. But above all, we can be thankful that God never abandons us in our suffering. He is always near, giving us strength, giving us peace, giving us guidance and direction.

Secondly, it is true that the more we are thankful for what we have, the more we see the positives that struggles bring us. Further, as we get used to being thankful for the beauty around us, the opportunities that come our way, the fact that God is with us, the people in our lives that help us, the more joy we are able to have.

I’m not saying this is easy, but it is powerful! At first, you may only see one good thing in the mess that you perceive to be your life. Soon, you can see more. Keep looking for them. You see what you look for. Look for a red car and you will see them everywhere. Look for a blue car and you may never notice the red ones. Think of this as an exercise similar to I Spy that you played as a kid. See how many blue cars (blessings, joys, good things, beautiful things) you can see each day. After a while, you won’t notice the red cars (negative things) as much.

This is a powerful encouragement to cultivate in yourself and that is why I discuss it frequently here on the blog and why I have included it as a theme in the Life Beyond Surviving Facebook Group. I post a prompt each week called, Thankful Thursday as a chance for you to think more about the good things in your life. I hope you participate with me as I get just as much out of them as my members do!

For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God.” – 2 Corinthians 4:15

Next week, I’m going to talk about how humor is another way that may encourage us through difficult times. Join me!

Six Things God Uses to Encourage part 2

Last week, we talked about how the Lord uses scripture to encourage us and I shared a bunch of quotes from the Bible, but it was really just a small sampling compared with what the Lord says that encourages us in His Word. This week, I’d like to talk about two more things God uses to encourage His children.

1. Music is a powerful form of communication that can encourage us.
I’ve talked about this on my Art of Eloquence blog in years past. It’s powerful because it not only uses sight (words) but also uses sound which evokes powerful feelings. Music sets the tone for movies so that without it a scene may not have any impact at all.

Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts.” -Colossians 3:16

“But at midnight Paul and Silas were praying and singing hymns to God, and the prisoners were listening to them.” -Acts 16:25

It may seem a strange thing to do to sing songs when you’re in trial – when things seem dark. But it can actually help you express your sadness and then lift you up. Once we are ready, we can sing praises to the Lord assured that God loves us and will help us to get through whatever we are in the midst of. This is why I’ve chosen Wednesdays to share uplifting praise songs on the Life Beyond Surviving Facebook group.

Some songs make us sad as we remember a time gone by in which things were easier or happier or not as difficult. Other songs can give us a hope for the future by reminding us of what God has done, can do, and will do again.

2. Fellowship is another form of encouragement that God gives to us.
God uses fellowship to help us feel connected and to help each other.

For where two or three gather in my name, there am I with them.” -Matthew 18:20

Since the chronically ill often isolate either by default or by choice, the Life Beyond Surviving Facebook group is a powerful fellowship! This is why I have designated Social Saturday as a time to ask questions of the members of the group so that we can get to know each other better.

I have designated Mondays to share my blog posts in the group with the primary goal of letting members know that they are not alone in how they feel in dealing with their chronic issues.

Next week I’m going to share another thing that God uses to encourage us.