Healing Words

Deanna Nichols

“The words of the reckless pierce like swords, but the tongue of the wise brings healing.” -Proverbs 12:18

Yesterday I had a great conversation with a health and fitness coach with whom I recently started working. Not only did she give me some great ideas to work toward my personal goals, but I also found myself leaving the conversation with a lot more hope than I’ve felt in a long time. It’s interesting I should be so hopeful because I’m really having a tough time physically right now. And we also spent a fair amount of time discussing my past history of chronic illness, a topic that usually drains me and makes me sad.

Instead, she was able to focus on the accomplishments I’ve made in the past two years toward a healthier me.

I later realized my coach did a simple yet powerful thing: she used her words to bring healing–healing to my spirit and even to my body. After we spoke I was more inspired to remain on the path of a healthy lifestyle, and I was so energized by hope that I went ahead and started my new exercise program that I’ve been putting off for months because I didn’t feel well enough to try. Which, in turn, inspired me to eat healthy and work out again today. And maybe I’m imagining things, but my current flaring health symptoms seem to be better too.

Recently I’ve had a lot of reckless words spoken into my life and my health situation. Well-meaning family members, friends, and doctors have said things that to some degree, robbed me of hope, faith, and joy. It’s been a fierce battle in my heart to fight off the constant barrage of negativity their words created. What a contrast with my experience yesterday!

This is a great lesson for all of us. Before we share that “helpful” idea or something “the Lord laid on our heart” that our loved one “needs” to hear, let’s ask ourselves if we are planting seeds of hope and healing or if we are truly piercing them with the sword of our reckless words.

“Set a guard over my mouth, O Lord; keep watch over the door of my lips.” (Psalm 141:3)

About the Author: Deanna Nichols is a woman of faith searching for purpose in the midst of a lifetime of physical illness and pain. She has been diagnosed with narcolepsy with cataplexy, polycystic ovarian disease, Hashimoto’s thyroid disease, and many others. Her chronic illnesses make it impossible for her to work or even drive, so she is mostly home-bound. She is on the Board of Directors for her family’s commercial lawn maintenance business, is an avid reader and book reviewer, and uses social networking to encourage people with chronic illness, educate those without illness, as well as to share what she’s learned regarding natural health. She lives in Northeast Florida with her husband of 12 years and their 5 furry children. Read Deanna’s blog A Fragile Faith.

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What Does it Mean to Accept Your Chronic Illness Diagnosis

Lana Barhum

Acceptance is one the toughest things that anyone of us has to do. Whether we are accepting the loss of loved one, moving to new town because of a job transfer, getting divorced, or accepting that we have to live with sickness and pain, acceptance isn’t easy. With chronic illness, the sooner you accept your diagnosis, the sooner you can work on being healthy.

I know that this really does make much sense but from experience, I know that it is a process and it takes time and trial and error to learn to how to best live with chronic illness.

 

My diagnosis

When I received my rheumatoid arthritis (RA) diagnosis, I promised myself that RA would not win and I remember the feelings of fear, denial, numbness and skepticism. My emotions changed from day to day and even several times a day. Feeling hopeful or optimistic were a long ways down the road and acceptance–well, that was something I never thought would happen.

In the beginning, I promised myself that RA wouldn’t win but all that happened was that I became depressed even though I insisted to everyone in my life that I wasn’t. The only thing that kept me going was that I knew that my children needed me to be their mother and chronic illness didn’t change that. My new RA diagnosis felt like a death sentence and the information on the internet make me feel that the disease would disable and disfigure me in five years’ time and end my life in ten years. A few months after my rheumatoid arthritis diagnosis, I was also diagnosed with fibromyalgia syndrome (FMS) and the blurry reality of what was my life started to become clearer.

I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers.

As a result, I started to educate myself and arm myself with information about rheumatoid arthritis and fibromyalgia that made sense. I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough.

Looking beyond the physical symptoms

I also looked at my life as lesson after lesson of patience, strength and survival. Having RA and FMS were the same as any other struggle that I faced in my life and they would probably be easier than some of those struggles. When I looked at my diagnoses as just another thing that made me who I was, I learned to accept that I had no control of what happened but I had control of the response as I had when other obstacles impeded my life.

The person that I was at that point in time was already prepared for RA and FMS and while it wasn’t easy or clear at first, I accepted RA and FMS in my life not because I wanted but because I had to.

Of course, it wasn’t easy to get to that point because living with an invisible condition (or two or three or more) isn’t that simple. And steroids, a lack of energy, physical pain, and weight gain can take a toll on you and blur your perceptive.

You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies. The disease doesn’t get easy but we start to realize how exceptional we are to be able to overcome so much.

Why you should accept your chronic illness diagnosis

One you are diagnosed with any disease, invisible condition, and/or chronic illness, it will always be a part of your life and the sooner that you accept your diagnosis, the sooner you can learn how to live with your disease. It is also how you will cope and how you will learn to understand that your diagnosis isn’t a death sentence. The only thing that your diagnosis has to be is something you have to live with and once you accept it, you can learn how exactly you will do that.

Chronic illness is kind of like life with its all ups and downs but living with an invisible chronic disease is like life multiplied and so very complicated. It is never ending roller coaster of pain and emotions.

There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis. Moreover, it is a bitter pill to swallow and unless you accept all these things, you will never be able to get past your diagnosis.

How you accept chronic illness in your life

In order to accept chronic illness, take a look at the advice you have received–pace yourself, manage your condition well, educate yourself, advocate for yourself, surround yourself with emotional support and don’t let the disease define you. This advice is your guide through the roller coaster of symptoms and emotional setbacks. The only thing that can prepare you for that next flare-up is experience.

There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier.

Make conscious decisions

As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks–they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time.

All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be.

Accept that it’s not all in your control

Understand and remind yourself that a chronic illness is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life. While it doesn’t define you as a person, it can still define your life.

The best thing you can do for yourself is to accept that you have to be flexible to live successfully with your chronic invisible disease. The disease might be your new reality but learning to be flexible means that you accept chronic illness in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up.

About the Author: Lana Barhum is an advocate for two online support groups, one for arthritis and the other for fibromyalgia. She was diagnosed three years ago with rheumatoid arthritis and fibromyalgia. She also works in the legal field and is a mother two very active boys. She has a blog titled: “Living Life As I See Fit” where she writes about living life with chronic illness.

Popularity: 13% [?]

The World Keeps Going And So Should You

By Fred Bittner

On the day I delivered the notice to my employer that I was going out on disability, they were sad, but supportive. As a Middle School teacher I worked with two hundred students each day. I was always around people and in front of people. The idea of my leaving left students uneasy. I had a great relationship with so many kids, and I was sure that my leaving would cause irreparable harm. But it didn’t.

Perhaps one of the biggest realizations for a person who has been put on disability is that the world keeps spinning. Society keeps going, the company where we worked continues to operate, and people go on with their daily lives.

We are remembered for a time, but eventually people move on, and the memory of us having worked for that company fades to a distant memory. Let me tell you what I am learning.

Your value is not found in the size of hole that was left when you went out on disability. Nor is it based on the declining number of people who call to check in on you. You are not measured by number of things you can’t do anymore but by what you do with what you have left. I am learning to deal with the fact that I am much more than the twenty-pound limit I can lift, or the amount of time I can stand or sit.

Like you, I have a disability, but it does not change the fact that I still have a lot to offer. We are told that when a person loses one of their senses, the other senses become more acute. I did not lose one of my senses. Instead, I lost abilities. I must now trust that other abilities will grow stronger to make up for the ones I have lost.

So, I must ask myself a series of questions: What can I still do well? How can I use what I can still do? Is there a project I can be passionate about? What did I start out wanting to do, but didn’t do because my career path took me in a different direction? Are those desires still in me? How can I stretch myself to accomplish those goals?

I must admit that giving in to a disability is very new to me. I am still spending way too much time watching the world go by without me. I am fairly certain that I am not alone in this. I guess we must continually check our focus. Are we concentrating on the person we are not, or are we stretching toward the person we have yet to become? One path leads to defeat, the other to victory.

Fred Bittner is an author, pastor, and educator. He and his wife Kim have been married 35 years. They have three kids, and five grandchildren. He has a web site at http://butyoudontlookdisabled.blogspot.com/

Popularity: 7% [?]

Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?

I am thrilled to announce that I recently had this blog post, “Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?” ran over at the Huffington Post. Please be sure to visit and leave a comment to help us increase awareness of invisible illness issues.

Lisa Copen
Invisible Illness Week Founder

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How to Decide Your Career Future When Chronically Ill

By Jennie Krogulski

Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?

What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.

I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.

However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.

While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:

• Your current field of work: Is it suitable for a work-at-home environment?
• Your relationship with your employer: Are they flexible?
• The way your home is set up: Do you have room to work from home?
• Your financial situation: Do you have funds set back to start up a small business if needed?
• Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
• Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?

Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.

I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.

God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”

Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.

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The Invisible Woman

I’m smiling.
What else can you see?
Probably nothing.
Because you can’t see past it.

I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.

What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.

I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.

So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.

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My Illness No Longer Controls Me

By: Carolyn Matheson, Master Certified Coach

Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.

I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.

I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.

As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.

It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.

When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.

What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.

I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.

Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: carolyn@peopleworkbest.com; twitter @capcoach; blog www.carolynsmatheson.com

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The Invisible Symptoms of Multiple Sclerosis

Many symptoms of multiple sclerosis are invisible to the casual observer. We aren’t all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.

In many ways, that’s a good thing. Who doesn’t want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of M.S. can also cause misunderstanding and lead to emotional stress.

Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.

That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?

“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — there’s obviously nothing wrong with you, so why are you faking it?”

That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve got to make peace with ourselves.

We can do our best to educate those closest to us, to help them understand invisible illness. But at some point we’ve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.

If we put in the effort to look good, perhaps it’s best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth.

If you love someone who lives with invisible illness, please take the time to learn all you can about their condition and really listen to what they have to say. Appearances can be deceiving, and not always a good indication of health status.

And one more tip — instead of saying, “But you look so good!” try “You look great… but how are you really?” A little compassion goes a long way.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. This was originally posted on Care2.com and has been reprinted with the author’s permission.

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How Do You Start Becoming a “Well” Ill Person?

By Sue Ingebretson

Embarking on a journey can be both frightening and exciting. When the journey is about health — your own health — you may feel that the frightening far outweighs the exciting.

If you’re someone who’s chronically ill, consider your current status:

• Are you where you want to be?
• Do you feel satisfied with your level of wellness?

Few would answer “yes” to that question. Understanding the health journey process goes a long way toward removing the “frightening factor,” and that’s where the following illustration helps.

When I describe what I call the Rebuilding Wellness concept at speaking engagements, I tell it this way. Think about fixing up a home. Maybe it appears rundown; the eves sag, the paint has peeled, and the once-green lawn has gone beige. Nothing that some operating sprinklers and a new coat of paint can’t fix.

But, if you put some thought into it before the elbow grease, a home that has visible problems might have others, too. It could have problems that aren’t visible, bigger ones beneath the warped siding. What if the roof leaks or the plumbing is bad. Even worse, what if the foundation has cracks – serious cracks. Would slapping on a coat of exterior paint suffice as the ultimate remedy then?

Our health issues are the same way. By the time symptoms appear on the surface, the problems that caused them have already run amok elsewhere. Chronic illness takes time to manifest. It stands to reason that the application of solutions will be no quick fix.

So, where to begin? Consider the type of “cracks” that are affecting your foundation: nutritional deficiencies, extreme stress, toxin exposure (internal and external), infections, injuries, and/or hormonal/thyroid dysfunction. Take a look at what you think affects you most. Begin an action plan to remedy these problems and fortify your “home.”

Tackling these “cracks” one at a time is a big job, but I promise, Rebuilding Wellness is always a worthwhile investment.

Susan Ingebretson is a writer, speaker and the director of program development for the Fibromyalgia Research and Education Center at California State University, Fullerton. Her book, FibroWHYalgia, (2010) details her own journey from illness to wellness. You can read more at her website, Rebuilding Wellness. Ingebretson’s writing has appeared in the National Fibromyalgia Association (NFA) online and print magazine, FibromyalgiaAWARE. Susan is also featured in the NFA’s Public Service Announcement, “The Science Behind Fibromyalgia.”

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“Bring On The Rain” Video is Comforting

Vicki Sodora of Palm Beach Gardens, FL shares the video with us below.

“Having an illness that effects every aspect of your life, relationships and how you view the world has been an eye-opening experience for me personally. After meeting with other people who went through similar trials, my heart broke. I know that some people just need to be HEARD. (REALLY HEARD!) I created this video – as an affirmation and an encouragement for others. I know that through trials, God has a plan to use them for good and that is hope to hold onto – through the pain. ”

(By clicking on the video it will take you to the location on YouTube whre the video resides so you can listen.)

Popularity: 3% [?]

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