Can One Person Make A Difference? The Story Behind The Notes

When Lisa Copen had 4 joints replaced in her left hand during the winter of 2009 she wore a scary looking outrigger splint for four months, 24 hours a day, that caught the attention of many people wherever she went. While some people awkwardly looked the other way, many approached her and started to share their stories.

Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share. Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond. She discovered other people with invisible illness felt the same way!

Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really “gets it.” And that one person can make a world of difference.

As the founder of National Invisible Chronic Illness Awareness Week, which she began in 2002, she chose 2010 to be the year of “Each One Can Reach One.” Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills.

With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible. The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.

It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add invisibleillness.com at the bottom so those who find the notes nowhere to discover more encouragement and get involved too!

National Invisible Chronic Illness Awareness Week is September 13-19, 2010. We hope you will join us in spreading hope to those who are hurting!

This event is sponsored by Rest Ministries, the largest Christian organization that specifically serves those with chronic illness, which Lisa founded in 1996.

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Living with DAILY Frustration of Chronic Illness

I have been going back and forth in my mind. . . I have this burning propensity to educate. I mean, yes, I went to school to teach, and yes, I will be home-schooling Jacob, but I want to educate people– on chronic illness. On invisible illness. Individuals, churches, organizations, etc. But I don’t know how to get started.

Doug and I were talking about this on the way to Ann Arbor yesterday. I was thinking of contacting area churches to see if I could speak to them about this…about how people with chronic illness feel, especially younger people. About how isolating it is,how frustrating and comdemning it can feel,how absolutely powerless you can feel.

But all those things I just listed come into play. . .  how can I schedule speaking engagements when I may be too weak to go? Doug summed it up: I need to find something with no dates or deadlines. The only thing that leaves is writing. Which I’m doing–I’m blogging, tweeting, e-mailing, and all the other e-things one can do with dial up. But it’s not enough somehow. I’m praying that God shows me what to do. How do I get “out there” without leaving home? How can I use my brain without my body’s cooperation?

I’ve never been a girl who liked limits, but MAN have I had to be a quick study. I know I have to take care of myself and my family before I go elsewhere. But I’ve been mistreated, misjudged, misunderstood SO many times that I want others to know what it’s really like. Part of taking care of myself is having a purpose.

I have to get crankin’ on my book. . . maybe that will be it.

It’s so difficult living with this constant frustration. I need to learn to be content where I am, yet I don’t think it’s wrong to strive to want more; to help more; to educate; I really dont’ believe most churches today know how to handle chronic illness. I have been BLESSED, BLESSED, BLESSED with many friends and helpful family members who help me frequently. Because of my illness and its varying degrees of severity, I do not attend church “regularly” right now, not for lack of want, believe me.

WITHOUT PLACING BLAME, there have been several churches that I have been involved with on many different levels that just don’t know what to do. But I’m realizing it’s not because they dont’ WANT to, it’s because they don’t know how, or don’t have the means. They will stand with you, help you for a while, but it seems that chronic illness always outlasts its contemporaries. If a church member who always visits moves away, the chronically ill remain. If the pastor gets called to another church, the sick stay. It’s not easy or fun or even desirous to ask for and need help. It’s frustrating. It can be humiliating. It can feel degrading. It can be embarassing. But the needs remain.

People are busy. Life is busy. It’s demanding. Everyone has a life. Even those with illness. How do you balance needing something but not being demanding or selfish? As a caregiver, how do you balance helping others while living your own life? A conundrum to be sure.

I am open to suggestions to what I can do to educate others, to what YOUR church has in place for those who are chronically ill.

To those who are caregivers, to those who volunteer, who help, who listen, who grieve with, who hold the hand of, who sit with the chronically ill.

God Bless you. You are angels. You are Jesus with skin. You may NEVER realize the good you can do by just being there. Thank you.

Kerri Sweeris is a 38 year old mom to her miracle child, Jacob, who just turned three. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness

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How to Give an Ill Friend Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support.

It’s ok to ask me how I’m doing. However, I’m not going to lie and say I feel “fine” just to make you feel better. I’m not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I’m not asking for your pity. I’m asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective. But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I’m crying, it’s still okay to talk to me. I don’t cry (much) from the pain. I mostly cry because I’m stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it’s just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don’t avoid me because you don’t want to deal with my issues. I won’t force them on you and, for the most part, won’t even mention them until you ask. Unless you’re my Momma. I seem to unload all my pain and symptoms onto my Momma because she’ll actually listen to me and not judge.

Which brings me to my final rant: don’t judge me. I don’t have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart.

I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease.

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible chronic illness may have a lot of advice for those of who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

National Invisible Chronic Illness Awareness Week is essential to help those who do not suffer to understand; and crucial to those who do suffer to find camaraderie.

Jessica Barto has suffered from symptoms of FMS and CFS since she was a teenager. Was diagnosed with Spondylolisthesis in 1993, and FMS in 2007. She invites you to visit her blog, Fibro Blog.

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

____________

*Source: Chronic Care in America: A 21st Century Challenge Revised

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Dear World

Dear World,

I find myself so frustrated sometimes. I feel that others expect – or occasionally demand – more of me than I am able to do. It is in many ways my fault. I do not offer explanations or, when I do, they are often incomplete. I’ve always tried to ignore “You can’t be sick, you look fine” because it can be very hurtful. I’ve believed that anyone who thought that didn’t want to understand. But how can they, if I don’t explain?

I don’t want to bother anyone and I tend to ask for help only as a last resort. Someone recently told me that every time I deny someone the opportunity to help me, I deny them the opportunity to receive blessings.

My goal in writing this is part self-advocacy and part education. At least one of the medical conditions I have most people have never heard of.

Sjögren’s Syndrome is an auto-immune disease (I call it my body is trying to eat itself) that primarily effects the moisture producing glands in the body. Aww heck, I was going to try to explain it in my own words but the Sjögren’s Syndrome Foundation does a much better job than I ever could. I shall quote from their web site http://www.sjogrens.org:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands…

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.”

Symptoms can be mild or severe; they may effect only the eyes and mouth or may be systemic; they may remain stable over time or worsen. I’ve been to two patient conferences on Sjögren’s so far and I have yet to meet any two people who experienced it in the same way. Part of that is because even in cases of primary Sjögren’s, it rarely seems to appear alone.

In my case, I also have fibromyalgia which more people are probably familiar with although it is as much an invisible illness as Sjogen’s is.

From WebMD:

Fibromyalgia syndrome affects the muscles and soft tissue. Fibromyalgia symptoms include chronic pain in the muscles, fatigue, sleep problems, and painful tender points or trigger points at certain parts of the body.”

Finally, I also have degenerative disk disease. I won’t be quoting for this one. I have scoliosis. When it got bad enough, they sliced me open and hooked rods to my spine to straighten it out. My spine proved to be as stubborn as I am and retaliated by curving the other way (kyphosis). It was severe enough to warrant correction; alternately I could do nothing and deal with pain from wedge shaped vertebrae later.

I didn’t know then what I know now, so I chose to correct it. I also couldn’t have predicted the accident three months after the surgery that fractured the last vertebrae in the fusion and ripped the hooks out. They used screws to reattach the rods, shoved me in a brace, and life was good.

What I know now that I didn’t know then: The fusion includes all but the lowest two vertebrae in my spine. These lucky vertebrae absorb all of my motions with no help from any of the others up until somewhere between my shoulder blades (T-6 for those that might mean something to). They are tired and worn out and not afraid to tell me about it.

That’s it for definitions. But I still need to translate all that into what it means for me.

My back (degenerative disk disease is too much of a mouthful and with henceforth not be used) is something I’ve been dealing with for a long time. I can’t stand for very long, I can’t walk very far, I can’t sit for very long. When I do sit, I really need something to lean against and some way to take my feet off the ground.

I don’t understand the exact mechanics of why those things help other than it takes pressure off places that get really irritated. Sometimes my back hurts a little, sometimes it hurts a lot, rarely it hurts not at all. Every once in a while, when it’s in a really bad mood over something, the muscles start spasming. On occasion when this happens I have been known to fall down.

Although I don’t know exactly what causes it to happen because it happens so fast, I do know that when it happens, I can’t stand myself back up. “I’ve fallen and can’t get up” is alive and well. Thankfully, that happens very, very rarely.

There are things I may be able to do to help with my back in general but they have to wait. I have more pressing concerns.

I miss the days when that was all I had to worry about although I didn’t appreciate them at the time.

Sjögren’s and fibromyalgia added a lot of new fun elements to my life.

• They are not curable.
• Doctors can only treat the symptoms. Figuring out what is causing a new symptom tends to be very frustrating for me and my doctors but knowing if there is an actual treatable cause is important.
• Some symptoms are obviously
• one or the other but some could be either. This complicates diagnosis and treatment exponentially.
  They both cause fatigue
• They both can cause widespread pain.
• Carpal tunnel syndrome has recently been added to my ever growing lists of diagnoses, but I’m in denial about it.

When I was first diagnosed, I was falling asleep every time I stopped moving. It turned out that was because my B12 levels were almost non-existent. I don’t understand how auto-immune diseases effect vitamin levels and cause that to happen. Many B12 shots later, it’s fine and my Vitamin D level has tanked.

Until that is back to normal and stabilized, there is no way to assess if my current medication levels are adequate. There is also no way to determine if what appears to be new symptoms are actually symptoms or manifestations of the deficiency.

Compared to where I was when I was first diagnosed, I am light years better.
I used to hermit because I didn’t have the energy to talk to people. Now I cave maybe 45% of the time.

• My brain doesn’t get up and walk out anymore as long as I keep stress to a dull roar.
• Everything still takes me ages longer than it should, but I do a lot more.
• I know the price I will pay if I do too much and I can usually identify “too much.”
• I have good days and bad days but as long as I don’t do “too much,” most of my days are average.
• You will probably never see me on a bad day.
• I am often tired but I’m happy that I can stop moving without falling asleep.
• I used to hate having to drive anywhere and refuse to get on the freeway because I was an absolute menace. I couldn’t concentrate well enough. I’m probably still a menace but, if I am, I don’t know it.
• I do not admit to pain if I can in any way avoid it.
• I do not know if I will ever be “better” but I will not give up trying. I can only do so much, though. If I don’t have the energy, I don’t have the energy. I will drive if I am tired – within limits. Some places are not always too far but can be when I am not feeling well. Not feeling well has many definitions and extremes. Some days making it out of bed is a victory and all I can ask of myself. Other days, I feel so great that it is hard to remember that I need to keep my activity to a dull roar.

So when you ask me to do something .. please remember .. if I’ve tried and stopped trying, there’s probably a reason. If I haven’t tried yet and it is something that won’t cause me physical harm, I’m usually willing to. If I tell you that I’m doing the best I can, then I believe I am. Maybe I can do better, maybe there is something I haven’t thought of yet. Maybe you have a suggestion that will help me. I’m willing to try.

But.

I put enough pressure on myself for three people. My stress level is typically at least at a simmer if not a slow boil because I still expect myself to be who I was even though I know I can’t be. I’m still learning. Your expectations (and, rarely, demand-feeling-things) only make things worse when I cannot live up to them. Stress is bad for both fibro and sjogren’s. It hurts. It’s exhausting. I get less done in more time which makes more stress and so on and so forth until it knocks me on my butt.

I am more likely to meet expectations – yours and mine – when everyone, including me, stops trying to pressure me.

I hope I made sense. I hope I explained. If you have any questions, please ask me. I will do my best to answer.

National Invisible Chronic Illness Awareness WeeK an important way for us to share information. The more we know, the more we continue to learn, the better we’re able to cope with these illnesses and understand each other as people.

Fiona is just a person who happens to have Sjogren’s Syndrome, Fibromyalgia, and Degenerative Disk Disease. She’s learning that she can’t pretend to be Superwoman anymore, much less actually be her. It is a hard lesson to learn, and even harder sometimes to explain – but sharing information is so vital.

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The Importance of a Good Support System

If you live with fibromyalgia, neuropathy, CFS, MPS, or another “invisible pain illness” there is no doubt you may come across naysayers, negative Nancy’s, friends and family who in the least don’t understand what you are going through, in the worst… don’t believe you.

Let’s face the truth, it’s easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. The web site www.fibrohugs.com has an excellent “letter to normals” that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.

When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.

So, if you don’t have support at home, work, or in your circle, what should you do? An excellent question.

I found an amazing support group online. Soulten’s fibro support is my favorite. This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on www.prohealth.com. They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don’t think I would have made it through the past year without having their support.

One of the hardest things I had to learn was to kick the negative Nancy’s to the curb. I cleaned house of the people who refused to believe my illness is not “all in my head”. As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn’t ask a cancer patient to see their chemo treatment for proof would you?

I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan.

Some days I don’t know what I’d do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me… and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).

Michele Kellenbenz is a fibromyaliga and neuropathy fighter. Michele blogs her struggle, accomplishments, and tricks for fighting the good fight against these invisible illnesses. Her hope is through her blog others will learn from her mistakes and not end up in the same situation. She is currently working on her first appeal for disability. When her hands are cooperative she also likes to work on transforming recipes from sugar to splenda, and makes gorgeous beaded jewelry. You will find Michele’s blog at http://ramblingsofinsanemind.blogspot.com. Also, make sure you follow her at http://twitter.com/chelekell.

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From Invisible to Invincible: How to Take Back Control of Your Health and Live Well with an Autoimmune Condition

I’ve been procrastinating again. I finished a book, started another one, woke up at 5am because I had half a glass of red wine last night for the first time in ages, lay awake in bed for two hours, worked out for 1.5 hours morning, chatted with a neighbor, chatted with another neighbor, made tea, made breakfast, watched a cat catch and eat a bird, doodled on some other social networking site. Now I’m writing this paragraph. Everything to keep myself from starting to write about what I really need to write about: my how-I-got-really-really-sick-and-how-I-got-well-again story.

I know part of why I don’t want to do this: I don’t want to relive it, I don’t want to focus on the negative (I never do!), as I’ll have to do when I write. But there’s something else nagging at me and I haven’t figured that one out yet.

But it’s time. And as much as I’m dragging my fingers right now, I know I’ll gain steam when I get started. So here I go!

***

3 years ago I felt like my life was over. Almost everything I had worked so hard for – my 10-year career including a prestigious master’s degree, my fit body, my intellect – went up in proverbial smoke. I couldn’t walk, I couldn’t work, I couldn’t think, remember things, or feel anything but pain all over. On the outside, I looked fine most of the time. But my body, my head, and my insides felt like they were crumbling.

Literally overnight, years of chronic stress and running on empty caught up with me, finding and seeping through the hairline cracks in my body until the built-up pressure broke down all the defenses. Up until that moment, I was a highly accomplished Type A, perfectionist, busy professional who was totally in control of her world, high heels and all.

But now, I felt invisible, like a non-entity: I was not able to be productive and feel good about myself, I was scolded on the bus by older women because I sat up front in the ‘reserved for disabled’ seats because I couldn’t stand (hey – I looked fine!), I was a nuisance to drivers because I crossed the road so very slowly (I could barely walk because of my severe neuropathy), I barely had enough energy to brush my teeth on most days, and even if I had the energy to, I had nothing to talk about and couldn’t relate to other people because I was consumed by my pain and medical agony.

Something shifted when I hit rock bottom: I wasn’t going to have it anymore. I wasn’t going to play by others’ rules that said “You have to be on this medicine,” “You will be pain for the rest of your life,” “You have to have this surgery,” or even “There’s nothing wrong with you.” I started playing by my own rules. And that’s when I started becoming Invincible. Even if I had to live in pain, I was going to do it on my own terms. I was going to rebuild my life.

Now I feel great, having been on the mend since about November 2008 after about two years of really hard work using my own body, mind, and spirit trio as guinea pigs, when all of a sudden ’one step forward, two steps back’ started becoming ’one step forward – oh, wait, look! another step forward! and another! wooo hoooooooooo!’

This is now the best I’ve ever felt, really: high energy, high spirits, my body is strong, my skin is glowing, no symptoms (as long as I mind my triggers – more on that later), no weird stuff, no colds / flus / headaches / asthma / etc (see below), and I am at peace with my life and my world. I love my life, my work / passion, my body, and everything this experience has taught me.

My standing diagnoses as of 3 years ago are (were?):

* Fibromyalgia
* Chronic Fatigue
* Undifferentiated Connective Tissue Disorder
* Multiple Chemical Sensitivity
* Immunotoxicity
* Post-Traumatic Stress Disorder
(with the Trauma being the overnight dissolution of my health at the age of 32)

These are what I’ll be writing about most of the time. But my past health history includes the following, which I may deign upon now and then as some of these may apply at some point:

* Chronic asthma (no more asthma now)
* IBS
* Many food allergies (down to a very few now)
* Chronic bronchitis (no more)
* Pneumonia (no more – no colds anymore either)
* Chronic tension headaches (very, very rare – maybe 2 x year vs 3 x month)
* A gallbladder full of stones due to heavy antibiotic therapy (gone – avoided surgery – got rid of them naturally in 2 months with the help of my Naturopathic Doctor)
* Medication-induced hepatitis and pancreatitis (liver still temperamental – hence the wine’s effect on me last night – but otherwise healed)
* Unexplained fevers (with no other symptoms – thankfully no more)
* A probable diagnosis of viral meningitis (yikes!)
* An atrophied left ankle due to faulty cortisone therapy (my ankle is fully healed now)

Eeek, right? No wonder I’m an “expert patient” and can emphathize with my clients – most likely, if you’re struggling with a health issue, I’ve been there too!

The good news is that the story has a happy ending, per se.

Okey doke. This is all I feel up to writing for today. As always, I welcome your comments and questions. I have a little bit of a backlog to get back to earlier posts, so please bear with me if you’ve reached out to me already…

Have a delicious day!

Simla Somturk Wickless, founder of Delicious Health, Inc., triumphed over her own invisible illnesses and now supports her clients to take control of their health and live their lives to the fullest as an integrative health, nutrition, and lifestyle coach. She especially enjoys working with entrepreneurs and busy professionals as well as those living with autoimmune conditions such as Fibromyalgia through her individual and small group programs. Sign up for your free eZine (online newsletter) and learn more at http://www.enjoydelicioushealth.com or read about Simla’s story on her blog at http://www.delicioushealthblog.com .

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How Illness Was Both My Loss & My Salvation

When the illness hit, it was sudden and hard with no warning. First thinking it was the flu, later finding out it was fibromyalgia with all of its symptoms and pain. A few months later along came the arthritis with the stiff and sometimes swollen painful joints.

I had three wonderful sons, a loving husband, a job and a nice home. Life seemed great until my loss came about. As a healthy, active woman of 41 this was hard to swallow. Chronic illness was something I had heard of but never imagined it would happen to me.

I guess you could say I went through the seven stages of grief.

First, shock and denial, those results have to be wrong! Not me, I take care of myself and my family. God would not do this to me.

Pain and guilt came next. Not only did it hurt physically from the illness, my heart ached that this was really happening. Guilt flooded in that I should have done things differently before this happened like going on more outings with my children. Taking more time away from work, housework and trivial things and spent more one on one time with everyone.

Anger, asking why is God doing this? I have a family to care for along with this lovely special needs child He has blessed me with.

Depression, and lonliness came together. Having an invisible illness made it hard for others to understand and believe what I was going through. Friends were lost. I was so sad that this happened. I hurt and could not go out and do the physical things I loved to do like playing basketball with the children or riding bikes. Gardening was also too hard. I felt so lonely. Like nobody understood what I was feeling or going through.

Would my husband leave me and would I end up all alone? Would my children go hang out with other friends parents who could do more and keep up? How could I care for my special needs child? Reflection falls into this category also, which I did a lot of. With the tears came the reflecting on my life. What I had done, not done and what I need to do.

The upward turn started from there. I was a christian, yet needed to totally commit myself to God. I could not do anything without Him in my life. I spent a lot of time in prayer and now know God was bringing me closer to Him.

He has things He wants me to do in my lifetime for His cause. Reconstruction and working through these difficult times was hard, but God saw me through. I have learned to pace myself so I can still go hunting with my son that likes the outdoors. Take time to stop what I am doing and go out to eat with my oldest son. God blesses me with the energy and strength to care for and spend time with my special needs child.

My loving husband has not given up on me. He helps when I need it and loves me for who I am. I have slowed down and learned to appreciate life more, and spend time with God each day learning more about Him and doing as He wants me to do.

I have accepted what I have and have complete hope in God that I will live a full life for Him. He provides the energy and strength to endure the pain and do what needs done.

I had felt for quit sometime He wanted me to start writing but did not do it. I have now listened and feel His guidance with my words I use to help others learn from my experiences. I write for His glory. I can do nothing without Him.

“What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ-the righteousness that comes from God and is by faith.”

Philippians 3:8,9 says, “Everything that is gained in life is a loss when compared to the greatness of knowing Christ. He takes our sin and shortcomings and exchanges them for His righteousness.”

Through my illness God has changed my life for the better and I have salvation through Jesus Christ and know what wonderful things lie ahead for me in heaven.

National Invisible Chronic Illness Awareness Week is worth celebrating and very important to help bring awareness to the public.

Kim is a wife and mother of 3 wonderful sons. She has lived with fibromyalgia and arthritis for 2 years now. Kim writes to share God with others through her experiences at her blog. Kim supports raising awareness for invisible illness as there is a great need for it.

Popularity: unranked [?]

II WK Hosts Ground Rounds 8/18

We are so excited and honored to host Grand Rounds 8/18/2009.

In case you have not yet heard of Grand Rounds, it’s a blog carnival that’s hosted on a different blog site each week. The host chooses a theme and links to medically or health/illness-oriented blogs posts that are submitted for the theme.

It’s always very informative and usually entertaining too. The hosts do a great job of keeping it interesting, whatever the topic!

Our theme? Invisible Chronic Illness, of course!

We are looking for all kinds of posts that have anything to do with invisible illness or hidden disabilities from both patients and medical professionals, as well as medical students, scientists, caregivers, counselors, social workers, or anyone who has had an “invisible illness” experience.

Here are some ideas:

• Are you a medical professional? Do you feel you understand invisible chronic illness? Do you have a family member who has an ICI who has changed how your understanding of patients’ experiences?
• Do you tend to treat patients who lack deformities, seizures, shakes, or other noticible physical ailments different even when you try not to?
• Are you a patient who has had an an experience– good or bad –with a doctor and his or her understanding about invisible disease?
• Do you believe men are treated differently who have conditions such as fibromyalgia which have been labeled a “woman’s disease”?
• What is a patient’s perspective of invisible illness, the emotions, the doubts people have, the lack of understanding about amount of chronic pain?
• Are you the friend of someone with an invisible illness? How has your friend communicated how he or she is feeling, even when looking fine? What changes have you made to accommodate his or her limitations, even though no one else may have known they were needed or necessary?
• “But you look so good!” If an ill patient doesn’t want to be told she looks good, what should she want to look like?
• When your illness goes from invisible to visible? Is the grass greener on the other side?
• How has Web 2.0 is changing awareness about invisible illnesses? A lot of patients are using social networking tools to spread the word about their disease/causes.
• How can technology, such as illness software for an iphone or using Twitter for pain diaries change how medical professional understanding the hour-to-hour living with an ICI?
• Are you the parent of a child with an invisible illness? How do you (or do you) explain an invisible condition (like autism or sensory processing disorder) when people say your child just needs to be disciplined more?
• What is invisible illness (yes, things like depression, panic disorder, etc. do count!) Share your experience with living with or treating patients, who have an invisible condition they must cope with that the average person doesn’t understand.
• Are you a caregiver to someone with an ICI? A spouse? How have you grown over time in better understanding ICI?

Your topic doesn’t need to be on the lis, this is just a place to start for ideas. We look forward to your submission, due 8/16/09 (but the sooner the better please!).

Rules:

• One entry per blogger
• Recent posts between 400 and 1000 words are preferred
• Posts are to be written for a general audience

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• Be Your Doctor’s Favorite Patient: Learn to Twitter! (invisibleillnessweek.com)

Popularity: 1% [?]

Missed Opportunities to Serve Ill with Exercise Options

We just got home from my son’s karate graduation and there was a table display and representative from the new womens local health club. It opened maybe 6 months ago and they completely rebuilt the building (meaning, they have invested a lot of money, especially for these times.) Last week they put up a banner that said “Reduced rates: $49 a month.” I’m sure they owners are hurting financially.

I had actually looked up their web site about 3 months ago to see if they had any kind of classes like Tai Chi. I keep hearing about how this can be a good strength building form of exercise and it’s something anyone can do –even people in who are confined to a wheelchair. My rheumatologist has recommended it and I am desperate for some form of exercise. It’s this or the pool and let’s just say I am not buying a swimming suit right now.

I haven’t done my research on it yet–spiritually–so if anyone has some experience I’d love your comments below.

But anyway, I asked her this morning if they had anything like this that someone with very limited mobility could participate in.

No… they have a form of Tai Chi mixed with yoga, mixed with Pilates and if I couldn’t get down on the floor (which I cannot) then I wouldn’t be able to participate in 90% of the class.

“What a missed opportunity for them!” I told my husband later at breakfast. “If they had a stretching type of class for women with chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, etc. they could advertise that as a specialty. Women would come from 15 or 20 miles away. If they had an instructor with credentials, they could send out flyers to all the rheumatologists, the Arthritis Foundation, and likely get a lot of referrals.”

I think I will drop by their office later with some Invisible Illness Week brochures and give them my two-cents. I know it may be worth about two-cents, but it financial times like this it’s important to think beyond the box of how we do business, and for those of us with illness, we should remind them just how many people out here really do have chronic conditions.

The woman I spoke with tried to grasp what I was saying and she kindly gave me a 2-week freebie pass and said, “Well, when you are feeling better than come try us out.” I smiled and said, “I haven’t been able to sit down on the floor for over ten years, so I probably won’t be able to participate any time soon.”

But we can do more than just say, “No, thanks,” and turn our back and grumble about how people don’t get it right? We can show them our challenges, our numbers (how many of us there are!) and how by recognizing this fact they may even be able to corner the market on our business before anyone else!

Lisa

Popularity: 3% [?]

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