You know you’re weird when your Neurologist says you’re weird!

As you’ve been reading this month, I’m a pretty odd duck. I hope you’ve been able to relate to at least one of the ways in which I’m not your average Jo…Jo. I hope it’s allowed you to feel less alone and brought some comfort to you that there is someone else out there who also doesn’t fit the mold…ANY mold!

If you just joined me here on Life Beyond Surviving and want to read the beginning of this series to see How Life Works on My Planet, how I’m Living the Weird Life, and get more acquainted with JoJo: A Space Oddity, just click on any one of those links. Today, my weird topic is all about how even most of my doctors thought I was weird.

Most of my doctors have thought I was weird over the years and now that I’m finally formally diagnosed with several things, it is no different now than it was then. Here are just a few of the chronic or health issues that scream JoJo is weird!

Hayfever, Schmayfever:
When I was a teen, I began having sore throats quite often. Since my tonsels are pretty big normally, I thought I had to have them out. Nope. I never had them out as a kid like most people my age did. I still had mine, HUGE as they are, in high school. My mom took me to an ENT (Ear, Nose, and Throat Doc) who told me that I have mild hayfever.

Huh?! Since I never sneezed, only had a sore throat and he never elaborated, I found that highly improbable. How do you have hayfever if you don’t sneeze? I disregarded everything he said and went along my merry way for years until I was in my 40s and a new doctor explained it to me. I guess some people, weird though we may be, can have hayfever and not have sneezing, but only a sore throat! Who knew?!

Just Mono My Own Business:
A malady most get during high school is called The Kissing Disease. Mono is something that knocks you out as a teen for a week or two. You get out of school and feel better fairly quickly I’m told. It’s not always from kissing. In high school, I think it’s usually just from sharing a drink or something with someone.

Anyway, I got it in my early 30s, if I remember correctly. I was working from home as a small business owner, raising a young daughter, and I didn’t know it at the time but I had Fibro. The doctor told me to just rest for a couple of weeks, but I didn’t have that luxury as a small business owner so I continued to work. It took me several months before I felt any better.

A Pox on Chicken Pox:
Most people (my age) got Chicken Pox as a kid. In those days, when someone in the neighborhood got it, your mom would take you to their house and have you play with their child so you’d get it as a kid. That way, you didn’t get it as an adult when it is more of a problem or (in the case of men, can leave you sterile). Well, I never got it in all the times in all the years I had been exposed. My mom said it was probably because I had a mild case of it as an infant.

Fast forward to my mid-30s, I felt awful. I didn’t have any health insurance so I called the doctor who said I had Shingles, the adult version of Chicken Pox! I immediately called my mom and asked her how mild a case I had as an infant. She said I had two or three Chicken Pox marks. Two or three?! So, folks, in case you’re wondering if you can get Shingles as an adult if you already had Chicken Pox as a kid, the answer is YES!

Fabulous Fibro:
Most of the people I talk to who have Fibro talk mostly about the pain of Fibromyalgia. Most of the memes on social media are about pain. For me, Fibro is much more of a lack of energy than pain. I have Fibro pain and I’m no stranger to pain. I had two kids with natural childbirth.

My Fibro pain is mostly controlled with a muscle relaxer I take at night that controls the pain through the day while allowing me to sleep a bit more at night. However, even when I had bad pain, I could usually muscle through it to get things done around the house. The energy drain during a flare is so severe that I sometimes cannot keep my head up or muster the energy to talk on the phone. Having to lay on a couch for hours or days severely limits your ability to DO anything.

As Fibro isn’t my only chronic illness, there are several other symptoms I have from other diagnoses that contribute to my fatigue.

1. Essential Tremors seem to take a lot of energy so, the more I shake, the more fatigued I get.

2. I’m still getting several hot flashes per day and it turns out that redistributing the heat in your body generated by a hot flash also takes a great deal of energy.

3. Insomnia means the body doesn’t get all the rest and rejuvenation it needs on a daily basis. After 20yrs, that may have a great deal to do with my lack of energy.

4. Finally, after gaining so much weight after my hysterectomy, I found myself using a great deal of energy just to do normal activities like walking around the grocery store while shopping.

Surgeries Surgeries Everwhere But I Still Have My Appendix:
I think I stated before that I’ve had nine surgeries in my life. In all the surgeries I have had, I’ve never had the usual/normal things removed. I still have my tonsils and my appendix! I’m not sure if I’m waiting for a special time or I’m one of the ones who will die with her tonsil/appendix boots on!

Neurologically Nutz:
Last, but not least, is the area of my life in which a doctor actually TOLD me to my face that I was weird! So, about a year and a half ago, I was finally diagnosed with Essential Tremors. I’ve had tremors in my hands for a long time, but they usually were attributed to being hungry/sugar levels being low. It turns out, I have tremors not due to any other known cause–which they now diagnose as Essential Tremors. I’m not sure yet what is so essential about them. I could certainly due without them!

While the doctor was examining me (and again at the next appointment when he was formally diagnosing me), he kept looking up at me and saying…”hmmm…” I asked him if I stumped him and he said my symptoms don’t make sense. You see, in addition to tremors, I had asked him about my smelling smoke that wasn’t there, feeling water drops on my legs that weren’t there, and feeling something touch the outside of my right leg when something touched the INSIDE of my right leg. He said they could be neurological, but it’s not something he usually sees, he has no idea why my body sends sensory signals the way it does, and I’m just weird.

And I appreciated that! It’s not often you find a doctor who will admit they don’t know it all and not accuse you of making it all up. Although, he DID say it was probably all in my head! ROFL And he’s probably right about that as a lot of the issues that are yet unexplained appear to be neurological.

So, there you are. JoJo is weird–even in all the diagnoses I have that many others share. Does that help make you feel a bit less like a weirdo out there? Can you relate to any of these or have similar things that are different about your experiences? Well, I’ve got one more post for you next week that might help too so come on back next week, ya hear?

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!

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.