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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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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Change Your Terminology

Chronic illness is not only isolating because it takes away some amount of our ability to get out and do things. It is also isolating because it’s not understood. WE are not understood. It came to my attention last month that this could be partially our own fault. Now, before you look for that stone to cast in my general direction, please read on.

How many times have you not told someone how you really feel for fear of being told you’re “complaining?” How many times have you under-reported to your friends and family how MUCH you hurt? How tired you REALLY are? Part of what I’ve shared here is not to talk about our issues too much with those who don’t understand it in order to minimize the frustration that comes from being questioned, grilled really, or told we don’t look sick or are making mountains out of molehills.

However, recently I reflected on my training in speech communication. The titles of most of my communication studies start out, “Say What You Mean…” and I wondered if there is a need to do that in our chronic life. Maybe it’s time we started saying what WE mean.

Replace Overused Terms
I’m really tired today” sounds like every Tom, Dick, and Mary who had a tough day yesterday. “I’m REALLY tired.” doesn’t sound much better. How many times have you heard someone who doesn’t have a chronic illness say that? What about when YOU said that and had someone reply with, “Yeah, I worked late last night.” It suddenly occurred to me that uttering overused terms might be part of the reason we aren’t taken as seriously when we try to share how we feel with those who don’t have the same point of reference for chronic illness as we do.

Terms like tired and pain have been used to mean anything from “I was up late studying last night” and “I cut myself shaving” to “I’m too exhausted to take a shower” and “I had my wisdom teeth out without benefit of novocaine!” Instead, it might be better to…

Be More Specific
In some cases, it might be better to use more specific terms. Even words like exhausted, worn out, and run down are overused. Often it’s more descriptive to use words the medical profession refers to like weak or fatigued. Pain can be referred to by the scale of 1-10 as it is by most chronic illness physicians.

At Other Times, it’s Better to Spell Things Out
Let’s face it, even exhausted doesn’t describe how we feel. Sometimes it’s best to give a short example of how tired we are that illustrates better what we deal with. “I’m so exhausted, I had to rest after taking a shower.” “I wake up feeling like I can’t get out of bed.

Another way to describe your pain is with the specific word for the type of pain you are experiencing: ache, twinge, throb, sharp pain, stabbing pain, or excruciating pain.

Don’t Use Terms That Don’t Mean Anything to Them
Lastly, though we who have these conditions know what they are, many who don’t have never even heard of the name of it let alone what it means for those who struggle with it.

While most people probably have heard of Fibro or Chrones, or Lupus, they have no idea what it means. Many people think Fibromyalgia is just pain and I don’t think many have any idea what Chrones or Lupus is at all. In some cases, it makes sense to give a good friend or close relative a more in-depth description of your illness or situation in order for them to be of more support. If you’re going to be spending a lot of time conversing or being with a person, it makes sense to give them the tools to understand why you may not feel up to getting together.

Some conditions are much less known that even the name of it isn’t ringing any bells for most people. I never heard of Essential Tremor until I was diagnosed with it. Not only is Essential Tremor not descriptive, but it’s counter-intuitive. Sounds like something you NEED. lol

Another term neurologists use is Benign Essential Tremor. Benign? Try living with shaking so bad you stab yourself in the eye trying to put on mascara or spill hot coffee on your lap! Instead of using the specific medical diagnosis, I often refer to it as tremors or as a neurological disorder.

In the case of Fibro, it’s more descriptive to use the term, Central Nervous System disease. That gives it the proper respect for the havoc it causes in the lives of Fibro Warriors and the kinds of issues we need to deal with on a daily basis.

Finally, the term chronic illness, itself, isn’t fully understood by most people. I can’t tell you how many times people have asked me if I’m all better now. It amazes me, but people don’t get the chronic part of chronic illness.

Chronic means there is NO Cure and the best that can be hoped for, without a miracle of God, is for it to be managed. Believe it or not, that is something that must be explained from time to time. People who don’t live with a chronic issue have no frame of reference for this. To them, long-term is a few months at most.

I pray this has ministered to your soul. I pray that this helps you get across to those in your life who need to know what your chronic illness means for you and I pray that it allows you more support from family and friends.

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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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