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.

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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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