Guest Post: Tanya’s Story

I have a lot to say about chronic illness because I’ve had it ever since I was a kid and I have had several different diagnoses in my 57 years on this planet. However, I find some of my fellow chronic illness survivors to be so inspiring and their stories share such important perspective and wisdom that I thought I’d share some of them here from time to time.

Tanya is a social media friend. I met her on Facebook and she is also a writer, blogger who shares some wonderful insights about chronic illness and Fibro in particular. She had a post on her blog that she has consented to share with us here.

People have asked me how can I smile while dealing with a lot of health issues. It isn’t always easy yet experiencing twenty- one years of chronic, intense pain, I have learned to use tools that are available to me. I have been in a chronic pain management program, been through tons of Counseling, and researched a lot about the pains and disease such as Fibromyalgia and Chronic Pain Syndrome that I deal with. I have learned what medications work or don’t work for me due to trial and error. I have a huge list of meds that I have a bad reaction to.

Another thing I do is when I’m in intense pain, I tend to keep to myself and try to rest and take care of me. I fought doing that for years but when the pain and symptoms became worse, I realized that I need to take care of me, speak up, and be an advocate for me because no one else will do it.

There are days that I’m not smiling but I try to keep my spirit and emotions up by watching funny videos on U-tube, spending time with friends in person, on the phone, or even on Facebook and finding humor in my pain or brain fog I get a lot. Yet the most important thing I have is my faith in God in whom I lean on for daily strength. Without Him, I would be way worse off then I am now. I can’t say it’s been easy or the road I’ve traveled was great. There were times I was mad at God for not healing me but I’ve learned that He is using all this pain I go through so I can identify and encourage others who are dealing with major health issues, as well. So for that, I am grateful.

Tanya writes a blog called Teensy Tidbits and runs a Facebook group called Fibro Brothers and Sisters. Check her out!

NOTE: If you are a Chronic Illness Survivor who’d like to share your story of how you got diagnosed, what you learned, what you think people should know about chronic illness, or something else you’d like to share, contact me! I’d like to include one guest post per month if that is possible.

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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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Protein and Fatigue

I’ve been talking about exercise and diet as it relates to chronic illness this month. Last week I talked about my quest to find something that would allow me to lose weight. This week I’d like to share a sort of discovery I made that added more energy to my day.

I was talking about trying to find an eating plan for weight loss with my aunt when she mentioned that she was told to have protein shakes in place of meals. After looking into the kind she used, I found that there was some research that suggested that older women should have more protein than the RDA recommended.

Here is just some of the of the information I found:

The current recommended dietary allowance (RDA) for protein is 0.8 grams per kilogram (g/kg) of body weight a day for adults over 18, or about 2.3 ounces for a 180-pound adult. But research is showing that higher levels may be needed for adults age 65-plus.” according to an article on Feb 12, 2018, called: How Much Protein Do You Need After 50? – AARP

Further, the above article goes on to say: “In our older years, we are at risk of sarcopenia, which is the loss of muscle mass, strength and function. The essential amino acids in protein are key nutrients for muscle health, but older adults are less responsive to low doses of amino acid intake compared to younger people. A 2016 study from researchers at the departments of Food Science and Geriatrics at the University of Arkansas found that this lack of responsiveness can be overcome with higher levels of protein consumption. The study says that protein levels in the range of 30 to 35 percent of total caloric intake may prove beneficial, although the researchers acknowledge that level could be difficult to reach for many people

People with sarcopenia may need 1.2 to 1.5 g/kg of protein a day, according to the Mayo Clinic; that’s 3.5 to 4.3 ounces for a 180-pound adult. It is also important to eat the right type of proteins, including some that include the amino acid leucine, which has been shown to preserve body muscle. “Leucine is found in higher amounts in animal foods: beef, lamb, pork, poultry, fish, eggs, milk and products made with milk. It’s also found in soybeans and, to a lesser extent, other beans, nuts and seeds,” according to an article on the Mayo Clinic’s website.

From anther: “Researchers say that the percentage of protein in the diet had a positive relationship with pain threshold, meaning that subjects who ate more protein had higher pain thresholds. The pain threshold is the point at which sensation becomes painful, and a low threshold is associated with fibromyalgia” . according to an article, Vitamin E, Protein May Improve Fibromyalgia Symptoms, from Sept. 6, 2015

Armed with this information, I decided to have a high protein/low carb shake instead of breakfast and a high protein/low carb protein bar for one of my healthy snacks. What I found surprised me! After a short while, I began to feel more energy! Energy I hadn’t felt in many, MANY years!

As I mentioned last week, I had asked my doctor for her ideas for losing weight and she suggested I limit my calories to 1200/day. When I began keeping track of calories, I found I was only eating 900-1000 calories/day. Simply adding more protein, I began to feel more energy.

Something else I found was that actually eating more calories (the right kind of calories/foods) helped my weight loss program with my health coach. This got me thinking that those of us with chronic illness/conditions might actually need more protein or certain foods or kinds of calories to have more normal energy levels. I’m no doctor and I haven’t been able to find articles about this, but I plan to talk to my doctor about this when I go and this is why.

How many people with chronic illness fatigue have trouble doing normal activities? How many who are having good energy days fall off the energy wagon when they attempt to do exercise or housework or walking?

I also have Essential Tremors and I have noticed that, when I’m especially shaky, I feel especially tired. I’ve also noticed that many of my hot flashes are followed by an immediate lowering of my energy level. What if those of us with chronic illness fatigue need a higher amount of protein or a higher amount of calories from certain foods?

Has anyone else had better energy by eating more protein or more calories from particular foods? Is this a thing? Could this help Fibro? CFS? What say you?

Check back here next week for a look at food and chronic illness.

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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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What CAN you do? – Part 2

Last week I shared with you my first step in focusing on what you can do rather than what you can’t. The next step in the process of asking yourself what CAN you do is to ask yourself what you are already doing that you could put more of your energy into.

There are a few reasons this helps:
1. It gives you a purpose and that gives your life meaning.
2. It allows you to put your focus more on positive things.
3. The less free time you give yourself, the less time you will find your mind wandering to negative thoughts.
4. The less free time you have, the less time you have to dwell on what you can’t do because you’re doing great things!
5. The more you do for others, the more joy you will feel and the more you will know you are not useless!

In order to put more of your focus or time into things that give your life more meaning, you may need to focus less on things that don’t. Do you have a task you’ve taken on that you don’t need to be doing? Did you start a side business, but have no energy for it? Have you been doing something you thought you needed to continue, but the Lord has been asking you to give it up? Now would be the time to review and make changes in order to do more of what already brings you joy and gives joy to others.

To that end, what are you doing now that you could put more of your energy and focus into?
1. Job?
2. Kids?
3. Church?
4. Online ministry?
5. Online business?
6. Art?
7. Writing?
8. Blogging?

Well, that’s it for step two. I’ll be back next week with step three!

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What CAN You Do? – Part 1

Chronic illness takes so much away from you that your thoughts often dwell on what you can’t do anymore. I can’t work. I can’t go out today. I can’t clean the house. I can’t do for my kids. I can’t help the church. I can’t help a friend. I can’t feel useful. And that right there is the cause of sadness and even deep depression.

But it doesn’t have to be. I’ve felt that way myself, but I have developed some habits that have helped me to get out of that funk and feel useful which, in turn, increases the joy I feel day to day.

It all started with a question I asked myself. “What CAN you do?” You see, I had many times when I felt like I was too tired to DO anything. Too brain fogged to THINK of anything. Too overwhelmed to make any sense. And yet, I always found SOMEthing I could do that would make a difference, that would be positive, that would be of value to…someone, anyone.

There are four parts to this process and I’m going to cover one part per week this month. The first step is to think less about what you can’t do and more about what you CAN do. It sounds simple. It’s not. It is the hardest step in the process, but it’s worth every effort.

So many devotionals I’ve read and so many of the PMA books out there are like the Just Say No campaign. Just think positive. Just be thankful. People have it so much worse than you! Well, it may be true, but it isn’t helpful, especially when you’re in the throws of despair or you are still grieving the loss of your old life.

But there are several things that can help you to begin to think this way and here they are in no particular order. Do the ones that speak to you. Use the ones that you can and see if you can start others later as you begin to heal from the overwhelm.

  1. Start a gratitude journal
    You don’t have to publicize it. Just write down one thing each day that you are grateful for. One new item each day. Then, after a week, look back on it. After a month, after a year… The more you see in your journal, the more you realize just how blessed you are even if you do have big things to deal with.
  2. Find the humor in life’s other struggles
    I can’t tell you how many times I have had little weird things happen. These little weird things didn’t always seem really little to me at the time. But later on, I found them to be much smaller than the illnesses and conditions I face and so I now see them as not as important. I see them more as inconveniences that are kind of funny…sometimes at the time!
  3. Compare the size of the other struggles to your big ones
    If you can’t find the humor in the other struggles that come along or you still get upset when things are compounded by all life’s glitches, you can try comparing the big struggles to the little short-lived ones.

    You’re already tired and in pain, but you go to the kitchen to make dinner for your family and the oven knob falls off in your hand. You pick up the pot and the handle falls off. About this time, you’re probably thinking that someone is out to get you.

    You’re frustrated and angry, but what if you could stop and think about the size of these issues as compared with your bigger struggles, the size of your love for your family, and the blessings you have despite the problems you are in? What if you looked around and asked yourself, “Where’s Alan Fundt? Am I on Candid Camera? What if you saw the humor in it. What if you skipped to the part where you put the handles back on and that problem was solved?
  4. Think about how the Lord might be leading you to better things
    My husband was fired several years ago from a job we moved to Indiana for. We had to move out of the house we were going to buy. Because of that move, my new doctor wanted to check to see if a huge fibroid I had in my uterus was still there–even though in all likelihood, it was gone due to my age. The fibroid was gone, but a cyst on my ovary was found instead. Surgery to remove that cyst and the fallopian tube attached to it revealed a rare and aggressive cancer in its infancy.

    If it were not for that series of events starting with that job loss, I’d be dead now. Sometimes bad things lead to good things. Sometimes we are privileged to know about them. Sometimes we are not. So, if you don’t see it, just think about how it MIGHT have benefited you. It sure did for me!

Remember, this is the step that takes the most time, but the good news is that you can do them simultaneously with the other steps…which I will discuss in the coming weeks.

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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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Do you hurt when you travel? I have an idea!

I’m taking a break from the monthly video series to bring you this Fibro Travel Tip.  You see, over the Christmas holiday, I had to travel to my Sister-in-Law’s house to visit my Mother-in-Law who is 93.  She used to travel to us, but she can no longer handle the plane trip and being in a home that isn’t suited to an elderly woman who needs help with showers and such.

While it was a lovely time being with my husband’s family and getting caught up with their lives, it took quite a toll on my body.  Here’s why:

To get to the airport, I first had to travel a half hour by car with a stiff ride on Indiapotholedled streets.  Next, I had to wait in line to drop off the baggage and then in the TSA line. The plane seemed exceptionally tight, even to my husband and son. I’m only 5′ tall and it was so cramped on the plane that even I couldn’t cross my legs!

After the 5-hour plane flight, unable to change positions, I found myself just about crying almost to the point of being sick from the pain.  Head in hand, I tried, unsuccessfully, to alleviate my neck pain which had traveled into my arm, back, jaw, and my left eye.

Arriving at the San Fransisco airport meant that I had to walk all over the airport. First was a stop to retrieve our luggage. Next, we had to take an elevator up, then walk a bit, then an elevator down, then walk some more, then take an airbus on a rail to another part of the airport where we could get to the rental car area.  I think we took all possible modes of transportation that day except a boat!

After getting the rental, we still had to travel three hours plus by car to get to Sacramento where my in-laws live.  So, by that time the only part of my body that didn’t ache was my left pinky toe!

On the trip back, I had a bizarre encounter with the SF TSA.  You can read that hilarious story by clicking here.  Just before getting on the plane, my back was killing me so I took some ibuprofen.  And just like that, I wasn’t in nearly the pain I had been on the trip out!

I will NEVER again fly without first taking some ibuprofen!  Even if I still have more pain, at least it will be MUCH less! In fact, I’m going to be doing this even on our 1.5-hour car rides to and from my son’s college.

If you think this might work for you, I’m glad to have been of service!

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