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And I’m Still Writing…

Ephesians 2:10 says, “We are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them.” 

So, long before we were born, God knew what our lives would look like and He gave us what we needed to do the good works that we were created for. The challenge for us, then, is to seek His guidance in how we do that because life can change drastically for us. While that’s not news to the Lord, it may require some tweaking on our part.

Some Background:
I was perusing Facebook the other day when I came across a long time friend’s post (Cindy Rushton) talking about being an overcomer. She posted, “You are designed and destined to be an overcomer!” My first instinct was to be sarcastic so I said, “Well, I certainly have been given enough to overcome!”

As the discussion went on, I relayed how I had to make some adjustments over the years in order to keep writing. The limitations of chronic illness had a profound effect on my ability to write from the thinking process to the physical act of writing. However, I have found workarounds and even changed what I wrote about over the years-lending my voice to different passions I’ve had…and I’m still writing!

I’ve written a lot about my life on this blog and all the adjustments and limitations I have had throughout my years, but I had really never thought much about the ways in which I had to make changes in order to continue writing until one of her last comments to me, “That was powerful!

As I looked at her words typed there to encourage me as she so often does, it suddenly hit me that my writing testimony really IS powerful. Right then and there, I felt the Lord leading me to write a part of my testimony that I had never considered much up until this point.

I was born a writer and I started writing even before I knew the Lord at the age of nine. I wrote poems and songs in my youth. In my teens, I began writing humorous one-liners about life I called JoJoisms. I’ve got well over 700 of them now. When I began homeschooling, I wrote books about communication skills and articles for homeschool magazines. And my most recent writing passion is here writing in support of those (like me) with chronic illness.

Now, when God gives you a passion for something, He doesn’t usually give you a clear path to success. You may have noticed that people who have gone on to incredible things have usually had a lot of struggles along the way. The Lord allows struggles: heartache, difficulties, and trails because many times that is exactly what it takes to get them done.

Have you ever heard of an accomplished pianist, a professional basketball player, a famous band, an accomplished actor, or a prolific writer who went from zero to hero in a straight line? Everyone has struggles to overcome on the way to where God leads them. It’s not the absence of trials that brings success; it’s what you do with them. It’s how you handle them, how you overcome them that defines you.

When God put a calling (writing) on my life, He factored in my limitations, my frailty, my stupidity, my fatigue, my pain, and my stubbornness! And my stubbornness is one of the reasons I didn’t give up my calling, my dream, my purpose, and my ministry! The other is Almighty God. Because…I AM an overcomer. …And I’m still writing!

Pain and Fatigue:
One of the first things that began to impact my writing was pain. Arthritis, neuropathy, and Fibromyalgia made my fingers and wrists ache. In addition, God only made me 5′ tall so, when sitting at a normal-sized desk, I was unable to reach the keyboard properly.

My first adjustment was to sit on my legs as I typed. Unfortunately, after doing this for many years, it took quite a toll on my lower back as well. Not too long ago, we solved that problem by switching me over to a laptop computer that I was able to use on the couch.

As the fatigue from Fibro began to increase, I was forced to let go of some of my other online activities in order to have the energy to continue writing. I had begun a copywriting service only to abandon it shortly after it launched as I didn’t have the energy to pursue that stream of income. However, that was for the best as I felt the Lord leading me to write in my own voice. …And I’m still writing!

Broken hand:
About six years ago, I broke my hand in three places after a roll-over car accident. My left hand was in a splint for months and when it emerged, I found that my middle finger had decided to hug my ring finger when I made a fist. Not thinking that this was a big issue, I decided not to have another surgery to fix it as I thought it only was an issue of aesthetics.

Not too long after physical therapy, I realized that I would have to relearn how to type! It took me several months to get decent enough to go back to my blogging and about a year for it to become natural. I still can’t snap my fingers with that hand, but fortunately, that’s not a skill that is required to write! …And I’m still writing!

Essential Tremors:
A little over a year ago, I was diagnosed with Essential Tremors. That’s what doctors call it when they can’t find a cause for your shaking. I had always had what I called jitters, but I had been told it was a sugar issue. It’s true that it was worse when I was hungry, but in the last few years, those jitters had followed fatigue and stress as well as JUST BECAUSE.

Further, they had spread from my left hand to my right hand, both legs, and my head when it was particularly bad as well as internal tremors that feel like I’ve just been asked “Your money or your life!” As you might have guessed, it’s even more difficult to type when your fingers have a mind of their own.

Part of the challenge for me now is that I like to write my notes for an article or book in a notebook, but it’s a bit hard to read my writing–even for ME! Lastly, it takes me 10x as long to type (or mistype) or write than it used to. I’ve been known to backspace and retype something six times and still have it come out wonky.

Final Thoughts:
The Lord’s call on our lives is still the same, even after the heartbreak of trials and the limitations of this life. It might not look like we expected it to, but it can be even better if we stay the course and cling to Him.

So, it’s been a bit of a journey to overcome these obstacles, but with God’s help, I’m adjusting. …And I’m still writing! What are you still doing with God’s help?

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Weird (Miracle) Cancer Story

When you have chronic illness, it’s easy to feel alone in the world because you tend to be more isolated than most people. I hope that this blog series has helped you to see yourself as a unique child of God with your own unique story.

Now that you know how truly weird I am, I have one last little bombshell to drop on you. It’s actually a miracle or series of miracles, but if you think about it miracles tend to be WEIRD, don’t they?

I didn’t even have cancer like a normal person…and I’m very grateful to God that I didn’t!

I Was a Cancer Survivor Before We Knew I Might Have Cancer:
Most people either feel sick or feel a lump and go to the doctor after which they are referred to an Oncologist who does some tests and probably performs surgery. Most or at least many, have to go through chemo and/or radiation.

Not me! Cuz I’m weird! I was a cancer survivor before even my doctors suspected I could have cancer! My diagnosis came as a result of several miracles. My doctor decided to go looking for a fibroid tumor that she knew probably wasn’t there and found a cyst on my ovary instead. During the surgery, the surgeon called an audible and decided to remove my entire fallopian tube on a whim. She said later that she just felt like she should do it because, “cancer likes to hide.”

Here’s the link to My Miracle Story with all of the odd details of how I survived a rare and aggressive cancer that, most often, takes the life of the woman.

I hope and pray that by now you’ve been able to see your weirdness less as something that isolates you and more as something that makes you, you…makes you unique. Don’t forget that miracles do happen and they are usually pretty weird! Wouldn’t you agree?

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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?

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JoJo: A Space Oddity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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Life Beyond Surviving Update

Life has a way of twisting and changing, especially as you grow older and especially when you have chronic illness. These changes lead me to make the decision to return to posting here.

Change#1: I have been classified as Medically Frail.
The way some people collect stamps, I collect diagnoses. My latest ones are Essential Tremors (ET) and Esophageal Dysmotility. So, I shake, rattle, and have a hard time controlling my throat muscles when I need to swallow…at times.

Change#2: There’s been a computer substitution.
The two things that affect me the most right now are Fibro and ET. But it turns out having your fingers shake makes it a bit difficult to use an iPad and that’s how I was able to get online ever since my computer decided to retire. We had to get our son a new laptop to be able to continue to do well in the Film Department at Purdue so I have inherited his old laptop. So, this and future blog posts are brought to you by RAMbus Maximus. RAMbus Minimus, my iPad, is taking a much needed vacation.

Change#3: The Facebook Shuffle.
For almost ten years, I’ve been growing a fan page over on Facebook I named after my blog, For the Love of Purple. When I transitioned to my new laptop, Facebook decided I needed to prove I was me in order to continue to have a voice to over 9100 Facebook fans. Unfortunately, Facebook wouldn’t send me the codes they want me to input and I tried so many times, it has locked me out until such time as Facebook decides I am worthy. I’m afraid my research indicates that it will probably never find me worthy and come June 3rd or thereafter, I will no longer be allowed to post as Admin.

Change#4: I feel God leading me in this direction.
After each of these changes, I have felt more strongly about sharing information, support, inspiration, and humor to uplift those who struggle with chronic illness and conditions. In fact, something that was being posted on Facebook prompted me to want to include Autism in that mix as my son has struggled with his Autism and I find very few people really understand it. To that end, I’ll be starting off this month with a short four part series on what Autism is and what it isn’t. I pray that this short series will help other moms who, like me, had no idea the struggles their child faces might be Autism.

I have a heart to help others who feel alone, struggle with conditions they don’t fully understand, or just feel like they need a place to be uplifted. I’d appreciate your help. If you find my posts helpful, would do me the honor of sharing the blog posts with others who need some inspiration, comfort, and love? Thank you!!

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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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New Series Coming Soon!

Hi Survivors!

Been posting several different blog series in the last several months.  WHEW! My fingers are tired! ROFL

I’ve got a new series starting up in August. It’s based on a very long video I did for my Facebook group.  I’ll be posting a 20 part series once a week beginning in August.  It’s called 20 Steps to Finding Joy in the Trial.

Until then, I will be taking a hiatus from the blog for the summer.  We are getting ready to send our last kidling off to college and become empty nesters.  [insert sad face here]

He’s our second child of two Only Children.  They are over nine years apart so they seem like an only child.  This will be a big adjustment for us…ok for him too! ROFL

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