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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!

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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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Having Fun with Chronic Illness

So several of you asked for an update and here it is.

It was Needle Day the end of May. I had an EMG (they stab you with little needles to see if there is nerve damage…sounds like fun, right? ) that found neuropathy in my hands which is probably carpal tunnel.

Later that day I had the blood test for cancer markers which my Oncologist said still shows that I am cancer free!

It was a painful day, but the worst part was I had to wear a red wrap instead of a purple one.  Oh, the horror! ROFL

After seeing the neurologist again for his thoughts on the matter, I now have a few more diagnoses to add to the list.  Along with the neuropathy and growing arthritis, I now also have Essential Tremors.  This is usually familial but isn’t for me as nobody in my family knows of anyone else in the family who has/had it.

It isn’t serious like the Parkinson’s and such they ruled out and it is slow growing.  I’ve probably had it since I was in my late 20s. I thought it was a sugar problem as it was mostly in the mornings before I ate as well as several times I had what I thought was a reaction to too much sugar.  I’ve since limited my sugar intake.  However, I do poke myself in the eye with my mascara and have been known to spill my coffee if I’m not careful in the mornings.  Other than that, I’m good to go for a while. When I’m in my 70s or 80s and I begin to resemble Katherine Hepburn, the medical community may have some better treatments. Until then, I watch my sleep, sugar, food, and try not to stress too much when people think I’m nervous or on something. LOL

Since most of these diagnoses don’t show up in blood tests, I can confidently say that I’m NOT weird!  Now some of you may not agree, but to paraphrase Sheldon from The Big Bang Theory, I’m not weird; my doctor had me tested!

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