Reflections on Invisible Illness Awareness Week

Invisible Illness Awareness Week is nearly over. I am sitting at the computer reading through some of the many the blogs, articles, comments and more that people have been posting on their experiences facing a world who does not understand their pain.

Wow.

Truly. . . wow.

You have been refreshingly honest, yet hopeful.
You have shared your pain, but kept it in perspective.
You have shared your hurt feelings, but without bitterness.

I am in awe of all of you who have shared your hearts. . . and your hopes.

Here are a few of the things that I have read that touched me deeply.

• I get so depressed when people just don’t get why I don’t or can’t do things they are so unaware of the pain and exhaustion. So, I just have been trying to get the message out there [about Invisible Illness Awareness Week]!
• Between work, pain, fatigue and friends I’ve become rather isolated because of it all. But taking it just one day at a time.
• I have to take so many medicines, and I am so just so tired of the whole thing – that is until I read this article. After I wiped away the tears, I began to realize that I have to start to really ‘live’ with the fact that I will have to take some of the medications for the rest of my life – and that’s ok.
• I attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling. It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.” That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them. So I did.

You may not be surprised about the pain that people feel, but I also hear so much hope.

You have shared things like. . .

• So I’m here to encourage all of you to live. There can be joyous moments in between the pain.
• The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you
• Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.
• I shared the hurt I felt and explained how I did not want to feel pitied or be a burden. My family and friends reached out and I opened my heart and let them in. Something happened, something magical that brought us each closer to one another.

It is so easy for illness to cut the confidence, attack our personality, and end relationships. Each of you have said in some way, “I can accept this illness without allowing it to define me.”

This year’s theme has been “Deep Breath, Start Fresh,” and throughout the posts and the comments, you have put this theme into eloquent words that express this in beautiful ways.

My deepest thanks for all the ways you have helped those with invisible chronic illnesses and hidden pain this week. You have stepped forward, crossed the comfort zone, and shared your heart and your hope and you have made a significance difference.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

Popularity: 10% [?]

What Does Invisible Illness Look Like?

Susannah Hunt

This year’s slogan for National Invisible Chronic Illness Awareness Week is “DEEP BREATH START FRESH.” That’s kind of what you do when you have asthma. You hope every breath will be a fresh and a better one. And those of you who know me, know I suffer from a severe form of difficult-to-control chronic asthma, plus I have a diagnosed wheat gluten allergy and suffer from rotten migraines.

But you, reading this, may also have an invisible illness of your own. One that affects every part of your life, just as my illness affects mine-perhaps, even more so.

• How many times have you felt that you were the only one?
• That people didn’t understand you because they didn’t know you?
• That people thought you were making it up?
• That people just assumed you were ok because you looked ‘alright’?
• That being ‘well’ was something you’d never be, or you’d never feel?
• That those around you–your nearest and dearest, couldn’t cope?
• That you couldn’t cope?

Probably multiple times, and most likely, most days.

Life with an invisible illness harbors a gamut of emotions. You feel anxious, insecure, guilty, frustrated, confused, misunderstood, misrepresented, fearful, emotional, and many more. And to cap it all, you think people don’t understand, because they can’t see what is going on inside of you.
Therefore, because your illness is chronic, incessant, unending, unstopping– alas, it’s invisible.
Back in February 2010, I wrote a blog post entitled “False Impressions: Do you Look Sick?” In it I wrote this:

When asthma is such a hidden disease, how many of you actually look sick with yours? Do we give a false impression of being a well person, or is it possible to tell that there is something going on inside that just isn’t right, and just by how we look? So how when we see anybody going about our and their daily lives, do we know what is going on inside of them? Of course, many diseases have outward appearance manifestations– do we sympathize, empathize, or pity those people? Ridiculous really, considering we also have a chronic illness – just one that they cannot see.

I suppose, nowadays there are aspects of my illness which make it a bit more obvious.

For starters I carry a POC (Portable Oxygen Concentrator)

Plus, because of the severe breathlessness I get, when I’m at work, 3 days a week, I ride around on my little mobility scooter.

But without those aids, I am just me. I don’t look any different from anybody else really. There is nothing in the way I act or dress or appear that shouts out ‘she’s got a chronic illness’ and that is why this week, September 12th-19th 2011, many people worldwide are joining together to speak out and speak up for those of us who suffer from a chronic and invisible ilness. Just because we don’t necessarily look sick, that doesn’t mean to say we aren’t sick.

The number of times I’ve been asked to show the photo on my blue badge makes me in itself, sick! Why do so many people assume that you have to look disabled to be disabled. Going back to my February 2010 blog post, how should a disabled person look?

Here is something else that you might or might not know about my invisible illness:

Every 4-5 weeks a huge stockpile of drugs and food stuffs arrives in multiple bags and I get the chore of piling it all into my kitchen larder!

Not that much room for basic staple house hold foods now, is there?! And this is a small example of what having a chronic invisible illness can be like. How many people, for instance would know that about me?

So whatever your illness, just remember, there really shouldn’t be a difference in who you are, how you feel, and how much you can bring to the world through your life. My world has become so different because of my illness, but I truly believe it not only makes me a better person in the long run: more tolerant, more understanding, more sincere, more genuine, and one that possibly has even more to offer than before.

I definitely live a richer, fuller, deeper life now, with my chronic invisible illness. Plus I have the closest of relationships with my partner, family, and friends.

And importantly, I have learned one major thing in all my illness and suffering. . .

I have learned the true meaning of compassion.

About the Author:
http://mymusicallungs.wordpress.com is the diary blog of a Severe Chronic Asthmatic, who also suffers from Celiac Disease and Migraines. Susannah somehow manages to teach music part time in her local High School. She is kind and compassionate, and even though her illness is always there, she is always smiling.

Popularity: 13% [?]

Featured Workshops Today: Helpful Tools

Looking for some basic tools you can use to start making life easier today?

Marcia Ramsland, entertaining media guest expert, speaker, and professional organizer, is well known as “The Organizing Pro” for her practical tips and clever solutions in homes and offices. She shows us how to “Simplify Your Home and Housework.”

And then find out even more on “Getting Organized” and “Parenting When Ill” (We thought those went together well!)

For getting organized we are joined by Karen Whiting, a freelance writer and author of 10 Secrets of Success for Women: Time. If you listen to Marcia’s first presentation, you will hear what Lisa (the host) got from the show and then this next one she shares about what she put into place.

For our parenting segment, we have Jill Hart is founder of Christian Work at Home Moms and co-author of So You Want To Be a Work-At-Home Mom. She’s worked from home since 2000, starting a home-based business. Jill lives in Nebraska with her husband and 2 children. Jill lives with a chronic illness. We were to have Christine Miserandino, founder of www.butyoudontlooksick.com, but she was busy being a mom who had to get her daughter to the doctor!

Kelly Young is the mother 5 of children, 2 of whom are severely hearing impaired. She’s homeschooled for 17 years, led parenting classes and Bible studies, and mentored others. Kelly has lived with autoimmune diseases most of her life and has several diagnoses, including rheumatoid arthritis. She founded RA Warrior.

Would you like to make a few simple, inexpensive changes in your eating style and get much more healthy despite your illness? Super Foods for Super-Natural Health with Joanna Faillace is a terrific eye-opener to some of what goes into our mouth and doesn’t that can help us or hurt us. Joanna Faillace is a Certified Biblical Health Coach awarded to her in 2007 by Jordan Rubin’s Biblical Health Institute.

Joanna is also the TV Host for Super-Naturally Healthy Kids with Chef Joanna, a series of health cooking video shorts which is broadcast daily on TBN’s Smile of a Child Network. Joanna is also a keynote speaker for Thelma Wells’ Ready to Win Life Skills National Conferences. In addition, Joanna is the author of Super-Naturally Healthy Families Cookbook Devotional.

Thinking of applying for disability financial assistance? Now more than ever the government is cracking down on approving applications in the USA. Be sure to check out attorney Scott Davis’ workshops from both 2008 and 2009 on “Applying and Winning Disability Assistance.”

Find even more we’ve not shared this week in our archives at Blog Talk Radio Invisible Illness Week Conference Room.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 5% [?]

How to Get Some Sleep When the Pain Won’t Go Away!

Shari Smith

Since my original injury in September 2009, I’ve had ridiculous issues with sleep, or should I say the lack thereof. I’ve tried multiple prescription sleep medications to no avail. Even strong pain medications make me feel absolutely horrible overall but don’t always break through the pain cycle enough to help me to sleep.

I am asked sometimes about the pain level and how I manage to function with it. To give you an idea, look at the McGill Pain Index, which details various types of injuries and the associated pain levels. The pain from CRPS (also known as RSD or causalgia), is rated slightly higher than the amputation of a digit. That’s right, the pain is WORSE than that you’d feel if you cut off a finger or a toe. Needless to say, sleep is elusive more often than not.

Clearly our bodies need sleep to heal and to renew. Lack of sleep hinders that renewal process, causing even greater pain, and a vicious cycle begins. Even worse, pain can awaken you once you have actually fallen asleep, resulting in non-restorative sleep. Altogether, the twin symptoms of lack of sleep and chronic pain can then result in loss of cognitive function.

I wish that I could say that I’ve learned coping mechanisms to help me deal with these problems, but the reality in my case is that “the best defense is a good offense.” How so?

• I don’t schedule early morning appointments if at all possible.
• I warn family and friends that I may at any time find it necessary to cancel plans.
• I keep my NOOK Color loaded with plenty of light reading to try to distract me during times when the pain is at its worst.
• I schedule medications that are most likely to cause drowsiness in the evenings.
• I don’t even attempt to drive when I am sleep deprived (which is pretty much all of the time). Driving while sleepy can be as dangerous as driving under the influence.
• I have surrounded myself with a support network that genuinely attempts to understand and accept the limitations of my injury and disease.

Most importantly, I’ve learned that I myself must accept the cognitive loss that comes with the pain and lack of sleep. As frustrating as it often is, beating myself up over it accomplishes no good. Instead, I strive to be thankful when the good days come and accepting when the day doesn’t go so well.

How do you cope with loss of sleep, especially when it is caused by pain?

About the Author:
Shari is the wife of a career Air Force man and mama to a beautiful teen daughter. After spending twenty years in the corporate world, both in the legal/financial fields as well as more recently in online media specializing in women’s interests, Shari’s professional life took an unexpected turn when an injury paralyzed her left leg, resulting in Complex Regional Pain Syndrome.

Not content to merely accept such a diagnosis and determined that something positive would come from the negative, Shari launched Rain into Rainbows, which serves both as an outlet for Shari’s thoughts and emotions regarding her life-changing injury and chronic illness, as well as a resource for other women with similar experiences. Her hope is that by sharing her story with others, she might begin to turn the page into the next chapter of her life as well.

Popularity: 12% [?]

Featured Workshops Today: Relationships, Dating and Marriage When Chronically Ill

Everyone knows that living with a chronic illness is difficult enough. But when you are married it also has a great deal of impact on one the most important people in your life–your spouse. Regardless of how much communication you may have, a chronic illness can easily add additional stress.

We would like to present a few workshops today which we think would be extremely beneficial for those who live a chronic illness and are married.

Pam Farrel, author of numerous books including, “Men are Like Waffles and Women are Like Spaghetti,” co-written with her husband, Bill Farrel, to share with us some of her best tips on how to keep communication in marriage going especially during those crises moments. How do women and men think differently and how can we use that to our advantage instead of letting it become a stumbling block? Pam has been with us two years so both her interviews are well worth listening to “Coping with Chronic Illness In Your Marriage”

Lisa Copen, founder Rest Ministries and Invisible Illness Awareness Week, also has a unique interview with her husband, Joel Copen, “When the Husband is the Caregiver Too” as he answers your questions from his work, about a husband role when he is both a spouse, and at some level, a caregiver as well. We hope this glimpse into their marriage, as well as their communication style, will be helpful to encourage you and give you and your spouse something to talk about. There is a heart-touching phone call at the end of this workshop from a caller who shares a husband’s perspective.

Be sure to listen in to the podcast with Laurie Edwards, author of “A Chronic Dose.” Laurie shares Friendships, Dating and Marriage: Can it All Come Together When You Are Chronically Ill?

And we are also joined by Invisible Disabilities Advocate founder, Wayne Connell, and his wife Sherri, who will share with us about living with an invisible disability and their marriage relationship too!

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 5% [?]

What it is like to have an Adult Child with Fibromyalgia

When I started my website I forewarned my parents that I’d like them to write a little something about how they have felt having an adult child with fibromyalgia. I think hearing different perspectives are good for everyone. Below are some of my mom’s thoughts. Soon I will have my dad’s thoughts as well.

From my mom. . .

 

Like all parents, we are so very, very proud of Felicia. We love her dearly. Yes, she’s the apple of our eyes – and The Helpful Hubby is the best son-in-law any parents could have. Well enough of the good stuff – now for the unexpected. Felicia has handled fibromyalgia better than I thought was humanly possible. Maybe receiving the diagnosis when a busy student at a large university is the time to get the crummy news. She couldn’t stop, she didn’t have too much time to reflect, and those papers and exams were always calling for attention. (I’m sure not a minute was wasted.)

 

Felicia’s diagnosis took about a year. She had not kept us “up to speed” about the number of different doctors but in an efficient fashion, we got the explanation, “don’t worry, don’t come up, there’s no cure.” Anger and fear weren’t really my feelings, more: sadness for my “baby,” “Ick, how can I help Felicia, maybe it’ll go away if it’s sort of a chemical imbalance.”

Mainly I wondered about her ability to conquer her courses and what, if any, adjustments the university would/could make. I wondered if she would get so bad that she would be confined to a bed. Then Felicia brought home a fairly technical book. I read most of it. She’s been bringing home reading material ever since. I’m not quite so ignorant about fibromyalgia now.

We still really want to help Felicia but, that is hard to do, especially with her living out of state. Always my first instinct is to wrap my arms around her and just hug tightly for a really long time—maybe hours. Well, with fibro, that’s not a warm, cozy feeling for her to say the least. I can’t say, “It’ll get better,” because it may get worse before it gets better. I want to bake goodies, but know I’ll be chastised because she’s trying to eat nutritiously. Since I live far away, I can’t run over and do the laundry or dusting. She’d probably love it if I’d fly out for seasonal gardening though. I’d like to baby her in many ways, but that doesn’t make her fibromyalgia get better, it doesn’t help Felicia deal with life better, it just makes Mom feel better.

Felicia, my husband, and I talk frequently. Felicia and her father have a very special, loving relationship. Mostly I whisper little prayers throughout the day. We try to support both her and The Helpful Hubby in any way we can from a long distance.

Generally when I see or talk with Felicia, the first thing I do is figure out if it is a good or bad day. When I can visit her, usually her general posture or eyes tell me, but sometimes it’s the braces, compresses, or verbal warning of, “don’t touch me.”

I hated during my pregnancy when everyone else thought it was the only topic to talk about. So, if Felicia wants to talk about fibromyalgia, I’ll talk, but I don’t make it the core of every conversation. Felicia is so much more than this condition. She is a vibrant, interesting, creative, intelligent, compassionate, and humorous woman who happens to be dealing with a lot of pain.

The major way I see her coping with fibromyalgia is through determination. If she says she is going to do something, it will be done. It will be on time and correct, and with bells and whistles, when appropriate. She has been the family organizer since age 4.

She tries to stay positive. It drives her crazy when people don’t even try to be pleasant when dealing with the public. Felicia is not one of those obnoxious cheery people. She wakes grumpy, gets headaches, has fibromyalgia; but she looks for ways to make things better, she doesn’t dwell on the spilt milk in life, and somewhere she has learned to make lemonade from the lemons life gives her.

Felicia monitors her activities. She is a really good planner. She will space steps out so that everything isn’t left until the last minute. Although she deals well with crisis, she hates being put in that position due to others poorly made plans.

Felicia uses tools that help make household chores easier. One, not-so-obvious “tool,” is being organized. She claims that everything in her house as its own “home.” She can tell someone exactly where to find almost any item in her house. This is helpful for others when they are trying to help her – no need to search around for items or feel badly asking where something is.

She researches fibromyalgia, reads books and articles, searches on-line, and learns continually. She is active in local groups, and of course she started her website and tweets. She really believes in a place for positive examples of people living with fibromyalgia. She hopes to be a banner of information for most, a shared moment for many, and a ray of hope for some. As her mother, I want her to succeed. As a person, I want you to succeed too. May this find you making progress which will lead to your good day.”

About Felicia: “I’d like to think that everything that I do in life is done with passion. To me it’s not worth doing something if you don’t believe whole-heartedly in it! I enjoy photography, flowers, baking, traveling and bicycling and am an active volunteer with my local Arthritis Foundation office. Everyone who knows me also knows my favorite color is purple. I started my Felicia Fibroblog in hopes that I would be able to create a community where people with fibromyalgia and other medical conditions relate. I planned to share resources I have found to be helpful as well as my own personal tips and tricks. I am lucky enough to know a few other ladies with fibromyalgia and will sometimes share their experiences as well.”

Popularity: 8% [?]

Labels of Love

Linda Elmore Teeple

“Nana is fragile,” my three-year-old grandson Evan declared. “She’s old, like Panda.”

Yes, it’s funny, and I take no offense, but our fourteen-year-old Labrador retriever is, in my opinion, far more fragile than me. Poor girl has lost most of her sight and hearing and her spindled legs spread-eagle when she walks.

During a recent visit, Evan spied a pad of stick-it notes on my desk and asked to have some. He then proceeded to plaster the notes everywhere. I didn’t see the pattern until he stuck one on my leg. He was labeling everything in the house that was fragile. His accuracy was amazing: TV screen, china cabinet, glass top tables, windows, decorative items—and Nana.

Evan looks at me with fresh eyes. His wisdom is pure, unencumbered by years of experience that will someday lead him to believe that he can look at the exterior of a person and judge what’s happening inside.

Just last night, my husband and I attended a social event where we chatted with several friends who are aware of my chronic pain. With awe in their voices, flickers of amazement widening their eyes, several friends said, “You look soooo good, you must be feeling better!” It is one of those moments when I want to look behind me to see who they are speaking to, for surely it can’t be me they mean.

What are they seeing that I’m not feeling? I appreciate their kind words and I’m female and vain enough to relish the compliments. I know they care about me and want me to feel good. I can share with them what is going on behind my looks-can-be-deceiving facade. I can take in their pained expressions of empathy and murmurs of concern, and welcome their hugs. Caring friends are like Evan; they see my fragility, understand the labels that define my condition and don’t judge me.

So, why was Evan plastering the house with stick-it notes? He was teaching his two-year-old brother Josh what fragile means.

I can hear Jesus saying, “Go, and do likewise.” (Luke 10:37 NIV)

About the Author:
Linda Elmore Teeple finds meaning and purpose in her chronic illness and pain through writing and encouraging others. Nature inspires her writing—the nature of the great outdoors, the nature of the human heart and the nature of relationships. Linda believes her call in life is to demonstrate God’s grace and to help others “get” grace on the heart level. You can connect with Linda at lindyteep@yahoo.com and http://natureofgrace.blogspot.com.

Popularity: 6% [?]

Featured Workshops Today: Working and Chronic Illness

If you are one of the millions of people who live with a chronic illness and yet you still get up and go to work every morning, you may find there is a lack of resources for your particular situation. Although you may feel as though you do not necessarily fit in with the career-oriented people who are healthy and not suffering from challenges on a daily basis, you may also feel that you do not specifically relate to those who are home a great deal of time and not able to physically work.

We have found some wonderful resources for you and you will discover that having chronic illness does not prevent you from also having an exceptional career. Although the career you have originally chosen may no longer be possible due to your situation and physical limitations, that does not mean that there are not thousands of career options that you may still choose from, a few which are likely to feel passionate about.

In fact, you may find that having a chronic condition may help you narrow in on your passions and what you enjoy the most, and thereby, make your career choice, an intentional one which can serve you in years to come.

Join us for a couple of workshops where we speak about careers and chronic illness and working well when chronically ill.

Are you interested in “Finding the Job You Desire and Can Do? Rosalind Joffe will be you through the process of looking at what your abilities are (and yes, your inabilities now) and how to go about choosing a wise career path that can work well with the and picked ability of your chronic illness, as well as those leadership skills you have mastered due to managing your illness effectively.

You will also hear from some people who have started their own business, such as Jennie Krogulski who is the founder of Hilton Head Nannies and works each day to best accommodate her career path as well as the daily difficulties with her chronic condition. Rosalind Joffe built on her own experience of living with chronic illnesses for 30 years, including multiple sclerosis and ulcerative colitis, when she founded cicoach.com. And Trish Robichaud is a Maximum Life & Healthy Relationship Coach who lives with multiple sclerosis & major depression. See Illness, Work, Career, and Starting Your Own Business

You also have the opportunity to hear from Lisa about starting Rest Ministries, the founder of Invisible Illness Week. She shares how she has Managed Chronic Illness and a Nonprofit Organization.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

Popularity: 4% [?]

Shedding Light on Invisible Chronic Illness

Jaime Sanders

This week is National Invisible Chronic Illness Awareness Week where all of us with chronic illnesses and those who do not shine a spotlight on the epidemic of having an invisible chronic illness and to be uplifting advocates for so many without a voice. It’s an unfortunate reality that so many people go unnoticed or are ignored and forced to suffer in silence just because they “appear” healthy. The stigma that so many are dealing with can undoubtedly be overwhelming. The theme for this year is “DEEP BREATH, FRESH START.” It is to remind us to take care of ourselves in healthy ways and how to add more joy and sunshine into our lives.

My personal connection with invisible chronic illness is my battle with chronic daily migraine, depression and anxiety. On the exterior I look great; healthy and doing well. Yet, inside I am suffering on so many levels experiencing different types of pain be it mental, emotional and/or physical. For 25 years I have lived with the stigma of migraine and having my illness reduced to just a simple headache when in fact migraines are very different from headaches.

Migraine is a genetic neurological disease, characterized by episodes often called Migraine attacks where the blood vessels that are located within the brain constrict or dilate. The main pathways to get important fluids to the brain are either getting larger or smaller causing extreme pain due to the inflammation that is occurring. Often, migraine is described as pulsating pain because that is exactly what it is. Blood vessels are rubbing against different parts of the brain causing indescribable pain.

Typical migraineurs experience two to four migraines a month. In my case, I have 15 or more a month for at least three months (a year now for myself), thus classifying me as having chronic migraine. The causes of chronic migraine are classified as such according to MayoClinic.com:

You develop a heightened response to pain signals
The part of your brain that suppresses pain signals isn’t working properly

Various factors can increase the risk of developing frequent headaches including:

Anxiety
Depression
Sleep disturbances
Obesity
Snoring
Overuse of caffeine
Overuse of pain medications
Regular use of positions that cause strain on the head or neck

Coping with this kind of pain is a very difficult task, especially when you throw in bouts of depression and anxiety both of which are comorbid with migraine. I have had many challenges in learning how to cope with it all. I even attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling.

Thankfully, I survived but had to spend three days in the ICU because the drug that I chose to end my life with and the amount that I took (almost a full bottle) causes such severe and quick damage to the brain and heart that I had to be monitored closely to make sure that all of it was removed from my system.

It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. They were the reason that I’m here today. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.”

That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them.

So I did.

So I’m here to encourage all of you to live. There can be joyous moments in between the pain. Chronic invisible illness does not have to be the end all be all of your existence. I understand how frustrating it is to feel ignored and mistreated and spoken to as if you are imagining your very real pain.

The many doctor appointments, prescriptions and failed treatments can all bring a a failed sense of hope.

Remember that you are never alone. And people like myself are here to help. There are so many resources available for healthy ways to learn how to cope with your illness and where to find help when you need it. Let’s all work together to make invisible chronic illness something that is impossible to ignore.

Online Resources:

• Invisible Illness Week
• Migraine.com
• National Patient Advocate Foundation
• Psychiatric comorbidity and suicide risk in patients with chronic migraine
• American Association of Suicidology

About the Author:
Jaime Sanders is a 25-year sufferer of migraine disorder and over the past year has had chronic daily migraine. Jaime has undergone many different treatments including Botox injections, acupuncture, cranial sacral massage, chiropractic care, pain management, and has taken over thirty different kinds of medications in order to try and control her very debilitating disorder.

She is a wife of 14 years to a wonderful and supportive husband and a mother to three exceptional children. Jaime can not work due to her disability but she has made a commitment to educate others about her neurological disorder so that others would not have to suffer as long as she has. You can follow her journey through her blog at migraine-livinginpain.blogspot.com.

Popularity: 9% [?]

Featured Workshops Today: Communicating With Others

Communicating is a big deal when it comes to making some practical steps toward living with joy. We recommend the following workshops from past years.
“Helping Others Understand Your Pain” with Karen Lee Richards, a writer and patient advocate who works at HealthCentral and lives with fibromyalgia.

It’s OK to say NO: Building Healthy Boundaries” with Jenni Prokopy is a nice reminder that we are allowed to take care of ourselves. Jenni is the founder of chronicbabe.com and a journalist.

And “How You Can Help Those Who Help You” with author Jo Franz who lives with multiple sclerosis.

Times get tough when you are “Coping with Crises on Top of Chronic.” Join Jenni Saake (founder of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage & Adoption Loss ) and Lisa Copen founder Rest Ministries, as we chat about surving crises in the midst of Chronic illness. Between the two of us, Lisa and Jenni have survived 45 years of multiple chronic illnesses including Chronic Fatigue Immunity Dysfunction Syndrome (ME/CFS), rheumatoid arthritis, fibromyalgia, diabetes, endometriosis, infertility, chemical sensitivities and more.

These women know that life doesn’t stop just because we are in pain. Hear us share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will share a few survival skills for coping with the stress of everyday life when crisis hits.

This year instead of having a live virtual conference we are featuring some amazing workshops from past years. You can find them all here on Blog Talk Radio or, if you use itunes, enter “invisible illness” under “podcasts” and then download them to a music player to listen to anytime. >More instructions here

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