"You who bring good tidings... lift your voice with a shout... do not be afraid... 'Here is your God!'" (Isa. 40:9)

Verse of the Day

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time.

(1 Peter 1:3-5, ESV) (Listen)

Living with Invisible Illness

Posted on July 19th, 2008 in Life Issues by Jonnie Wright

5 Ways to Surrender Frustrations of Living with Invisible Illness

By Lisa Copen www.restministries.com

“But you look fine. Are you sure you’re as feeling as bad as you say?” “You haven’t really experienced chronic fatigue until you’ve tried to raise three children on your own!” “I think if you just got out of the house more and didn’t think about it so much, it may just heal itself.” “If you were serious about trying to get well, you’d at least try those vitamins I recommended. It never hurts to try.”

And the remarks go on. . . and on.

And it hurts.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that affects their daily life. The range of diseases and included everything from back pain to fibromyalgia, arthritis to cancer, and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain. About 96% of illness is invisible. This means that the person who suffers from the chronic condition show no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.

If you have an invisible illness here are 5 tools to help let go of some of the frustrations:

[1] Let go of expectations. This may be a life-long process, but you will consistently find that people will always disappoint you, as no one is perfect-including you! Remember, you don’t understand the difficulties that your friends are going through, whether it’s a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives.

[2] Find supportive friends. If there is someone who is constantly belittling you or doubting your illness and he is beyond listening, let go of that friendship or distant yourself from that relative. Illness has a way of helping prioritize friendships and spend our limited energies with those that mean the most to us.

[3] Search for blessings in your life. Make a commitment to stop dwelling on how badly you feel, and instead search for ways to bring more joy into your life, even if it’s just appreciating the small things. What are you doing when you feel natural adrenaline kick in and give you extra energy? Most likely, that’s where your passions are! Bring more of these into your life. And don’t let your limitations stop you. For example, if you once loved to garden, now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system. If you want to aim high, consider starting a garden consulting business.

[4] Use your aptitude and talent for things you have a personal interest in. Too often we feel like the skills we learned in the workplace are no longer valuable. Perhaps you’ve always wanted to write children’s books or be a business consultant. Get involved in your community and do some volunteer or part-time work to continue to grow professionally. Rather than focusing on what others aren’t doing to comfort you, follow your dreams and give that gift of comfort to yourself.

[5] Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week’s message boards, or through your local support group, volunteer your time and expertise (yes, you’re an expert on living with invisible illness!) and use it to make someone else’s journey easier and you’ll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.

None of us have the capability to force another person to change, or to make them care. But we can educate them and give gentle advice. We must also continue to work on ourselves, however, because you will find that even when you want to change it can be a real challenge. It requires discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances, instead of change other people, you’ll be much more rewarded.

Planning a Successful Holiday

Posted on July 19th, 2008 in Life Issues by Jonnie Wright

Thoughts of a vacation should conjure up feelings of excitement and anticipation—but when you have fibromyalgia, the idea of spending time in an unknown environment can cause feelings of anxiety and trepidation instead. Your head can fill with questions like: Will the food agree with me? Will the bed be comfortable? How many stairs will there be? Will I be able to manage the flight without too much pain?

If you find out about the area, do a bit of forward planning, and arm yourself with a sense of adventure, holidays can be immensely exciting and enjoyable times.

Here are some tips on how to plan a successful holiday.

Getting to Your Destination
By Car:

  • After planning your route and working out roughly how long it is going to take you, look for suitable stopping places every few hours so you have the opportunity to stretch and move around to relieve stiffness and pain.
  • If the journey will take more than five hours, consider breaking it up and staying overnight somewhere. It is better to arrive at your destination a day later feeling okay, than to have to spend the first few days of your vacation recovering from too much time sitting in a car.
  • Travelling by car also gives you the advantage of taking as much luggage as your car can hold! You have the option of taking your own pillow, perhaps a comfortable mattress cover, food you like to eat, and as many pairs of shoes as you wish.
  • Take audio books to listen to as you travel, keeping your mind occupied and helping the time pass more swiftly.

By Plane:

  • Try to travel light. Use luggage on wheels—it’s easier to handle.
  • Always pack essentials—like your medication and a change of clothing—in your hand luggage in case your suitcase is delayed or lost.
  • Consider booking assistance at the airport. Navigating through an airport can involve walking long distances, and at the end of the flight you may be very tired and stiff; it is worth booking wheelchair assistance to help you get from check-in to the gate, and then from the plane to the luggage collection point. Simply ask when you book your flight.
  • If you are travelling with your own wheelchair, remove the control panel, footplates, and any cushions, packing them in your luggage to keep them safe.
  • To relieve pain and stiffness during the flight, ask for an aisle seat so you’re able to get up and move around every half hour. You can even do some simple stretching exercises while in the bathroom!
  • Take whatever you need to make the flight more comfortable—for example, your own cushion, heating pads that heat up on exposure to air, pain relieving gels, etc.
  • Try to drink as much water as possible to prevent getting dehydrated.

A Place to Stay
When choosing a place to stay, you need to ensure that is going to meet all your requirements. Phone your intended lodging to talk through your requirements with the manager or owners, rather than relying on information from the internet or a travel agent.

  • Ask for a room on the ground floor, near the office, to avoid lots of steps and having to walk long distances.
  • Ask about exact distances to places you want to visit, like the beach or local town, to help you decide if you will need to use public transport, rent a car, or take a wheelchair to help you get about.
  • Check that the hotel restaurant can provide food you can eat, or ensure you have the option to self cater.
  • If you are travelling with a wheelchair, ask for a wheelchair accessible room and find out what facilities are accessible in your accommodation complex. Check that the bathroom has a wheel-in shower.
  • If you have a power wheelchair, you may need a voltage adapter to charge it up if you are going abroad, as countries outside the US often supply a higher voltage.
  • If you have allergies, ask if they use feather duvets and pillows. You may need to bring a synthetic alternative.

Exploring the Local Area
Try to find out as much as you can about the local area before you arrive. You can often get maps and guidebooks from your local library, and of course the internet can offer a wealth of information. There is no point spending a lot of money on a holiday to find there is nothing you can do comfortably when you get there!

  • Research the accessibility of local sites you wish to visit, either phoning or emailing to ask any questions you may have.
  • Be selective in what you want to do. Don’t try to cram everything in so you become exhausted. It is important to pace yourself still and schedule rest times.
  • Find out about disabled parking, whether you can use your disabled badge in that country, and what the rules are.
  • Bear in mind that holidays can involve more walking than you are used to as you are unfamiliar with the area and want to see the sights. If you want to do lots of exploring, work out the best way to get about, either by bus, taxi, car, or perhaps a rented wheelchair.
  • If you take a wheelchair on your trip, find out what buses, trams, or taxis are wheelchair accessible. The local tourist board should have this information and provide maps illustrating which routes you can use.
  • If you have a wheelchair and plan to rent a car, look for the option of renting a small van installed with ramps. If this is unavailable, you will need to ensure that the trunk is large enough to accommodate your wheelchair and all your luggage.

General Tips

  • Journeys can be long and tiring, so schedule a rest day after your arrival to allow yourself time to recover.
  • If you are travelling across time zones, switch into your new time zone as soon as possible and then take your medication accordingly.
  • Find out the best time of year to visit: often spring and autumn are the best times to avoid the crowds and the possibility of intense heat.
  • If you plan to travel in the winter to a cold climate, ensure you have suitable clothing and remember that if you are sitting in a wheelchair you will get a lot colder than your more mobile companions.
  • Most important of all, relax and enjoy the novelty and adventure of a new place. Take plenty of photos and display them at home to remind you of your achievement and that there is a whole world simply waiting to be explored.

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This article was originally published in FMOnline. This free online newsletter is only available to registered members. Click here to register!

Interview Subjects Needed

Posted on July 19th, 2008 in Uncategorized by Jonnie Wright

Author Seeks Interview Subjects

FMOnline, August 2007

The author of the critically acclaimed book, JUST FINE: Unmasking Concealed Chronic Illness and Pain, is now recruiting participants for a new resource that will focus specifically on the challenges of living with depression, anxiety and other mood disorders. If you are a mental health professional and work with the population who live with clinical depression, anxiety, panic attacks, OCD, post-traumatic stress disorder or other mood disorders, or if you are male and live with a mood disorder and would like to be profiled in this new book and share your story, challenges and coping tools, please contact the authors Sahar: sahar.abdulaziz@yahoo.com or Carol: writefaceforward@yahoo.com. To familiarize yourself with the format of this new publication, see previous book: JUST FINE: Unmasking Concealed Chronic Illness and Pain or visit: www.writefaceforward.com./

Just Think by Roy Lessin

Posted on July 19th, 2008 in Devotional by Jonnie Wright

Just Think,

You’re here not by chance, but by God’s choosing.

His hand formed you and made you the person you are.

He compares you to no one else -

You are one of a kind.

You lack nothing that his grace can’t give you.

He has allowed you to be here at this time in history

to fulfill His special purpose for this generation.

- Roy Lessin

(Roy Lessin is co-founded DaySpring with 3 other ministers and is currently one of its senior writers. For over 34 years he has worked in this Christian company with a ministry focus. Roy’s desire is for his writing to bring glory to God, to be inspired by Christ and to be used by the Holy Spirit in the encouragement of believers throughout the world.)

http://store.dayspring-store.com

Study Needs 400 Participants

Posted on July 16th, 2008 in Health News by Jonnie Wright

National ME/CFS Genetic Risk Factor Study Needs 400 Participants

ImmuneSupport.com

07-11-2008 Researchers at Tufts University, Boston, and the University of Illinois at Chicago are issuing a national call for ME/CFS (chronic fatigue syndrome) patients in the U.S. to participate at no cost to them in a study to identify genetic risk factors that may be associated with the illness.

The study is designed to allow remote, home-based patient participation, allowing the broadest sample possible – with a target of 400 individuals, ages 13 to 64, with a documented physician’s diagnosis of either ME/CFS (‘chronic fatigue syndrome’) or mononucleosis.

  • The first portion of the study includes a phone interview and free home-based blood draw – target participation 400 patients.
  • The second part of the study will follow 40 selected ME/CFS patients and 40 healthy control subject over a two-year time period. These subjects will be interviewed by phone and submit home-based blood draws on three occasions during that period.
  • Throughout, participants will be able to continue their current routines and therapies.

The study’s principal investigators are:

  • Dr. Brigitte Huber of Tufts University and
  • Dr. Renee Taylor of the University of Illinois at Chicago.

Both specialize in ME/CFS research and have been involved, for example, in studying the possibility that those who develop ME/CFS may be susceptible to activation of an ancient retrovirus in the human genome.

Contact Information
To learn more, contact Dr. Renee Taylor
Phone 847-207-7944 (office)
E-mail rtaylor@uic.edu

“Insomniac” Book Review

Posted on July 16th, 2008 in Health News by Jonnie Wright

 Insomniac
by Gayle Greene
University of California Press, 2008
Reviewed by Dorothy Wall, author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome.*

Dorothy Wall reviews new book – Insomniac - for the benefit of ME/CFS and FM patients struggling with sleep problems

ImmuneSupport.com

07-11-2008Sleep problems are one of the cardinal symptoms of ME/CFS (and fibromyalgia), and if you’ve been “tired but wired” one too many nights, I strongly recommend a smart, eye-opening new book, Insomniac, by Gayle Greene.

In fact, what struck me most as I read Insomniac were the parallels between insomnia and ME/CFS.

  • Both are invisible, stigmatized epidemics.
  • Those with chronic insomnia face dismissive physicians who are all too ready to see insomniacs as neurotic or depressed.
  • Twice as many women as men deal with insomnia.
  • And, despite the seriousness and magnitude of the problem, there is astonishingly little research on the physiological basis for insomnia, even though the annual cost, from workplace absence and accidents, may be as high as $100 billion.

While most books on insomnia emphasize sleep hygiene (no naps, cut out caffeine, etc.) or cognitive behavioral therapy (just change your attitude), Greene’s book insists that we consider the biological underpinnings of insomnia, and takes a broad look at the sleep industry itself.

  • She takes the reader with her to sleep conferences, where speakers promote “sleep restriction” or CBT and show little interest in questions of how hormones or gender impact sleep.
  • She talks to physicians and researchers who, focused on behavioral treatments, shrug when she asks about neuroendocrinology or the genetics of insomnia.
  • She interviews insomniacs themselves, whose words are wrenching and poignant. Their understanding of their problem seems far more nuanced than that of the providers from whom they seek help, offering yet another example of the importance of listening to patients.

Unlike for ME/CFS, a multitude of drugs is available to treat insomnia, and here Greene provides an invaluable service, reviewing all the major drug and alternative treatments, from AmbienR and XanaxR, to melatonin and homeopathy.

Greene is balanced in her approach, walking readers through the pros and cons of each treatment, considering the side effects that drug companies downplay, the problems of long-term use, and the necessity of making choices that are right for each individual. Ultimately, she helps readers understand their options and feel empowered to handle their insomnia in a way that works for them.

I have rarely read such an intelligent, probing book, by someone who asks all the right questions. And, for a book about sleep, it’s a page-turner, as Greene combines the saga of her own slog through the land of sleepless nights with her pithy investigations and questions.

From the inside scoop on sleep clinics, to the fledgling science, to the need for grassroots activism, Insomniac tells the real story of insomnia. Anyone frustrated with the typical tired answers to sleep problems will value this revealing book.

____

Note: To read an excerpt from Insomniac, click here.

* Dorothy Wall (http://www.dorothywall.com) is author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome, winner of the “2007 Sand Castles Author & Book of the Year Award” from P.A.N.D.O.R.A., and coauthor of Finding Your Writer’s Voice: A Guide to Creative Fiction.

Top Tips for Dealing with Multiple Sensitivities–MCS

Posted on July 15th, 2008 in Chemical Sensitivity by Jonnie Wright

Managing Multiple Chemical Sensitivities1. If I know I am going to be where there will be flowers, perfumes, etc., I take an allergy pill 30 minutes beforehand. I also have told all my friends so when we get together they do not wear perfume, scented hair spray, or shower gels. 2. I avoid as much as possible any toxic smells. I bypass all stores that sell weed killers, etc.—also candle shops or aisles in the store that sells those products.

3. I stayed with a friend for a few days when our home was painted–and for three days afterward.

4. I always get “no smoking” rooms and bring my own pillows. If I am flying and have limited packing space, I bring my own pillowcases (printed with bright floral patterns so they don’t take them when changing the bed).

5. I use unscented detergents, fabric softener, shampoo, soap, etc.

6. I always wash brand new clothes before wearing them. If I get something dry-cleaned, I hang it outside for a day or so.

7. If I hear gardeners anywhere near my house, I close up and turn on the air conditioning.

8. I frequently change air filters, and have the ducts cleaned. I am not in the house when those things are done.  (My hubby even empties the lint filter on dryer.)

9. I am prone to migraines from sounds and flashing light. I do not go to movies or theaters. I wear dark sun glasses and good hunting ear plugs, and always have both in my purse. I wear an eye mask at night. I also wear large hats that cover a large part of my face.

10. If there is something on TV I really feel I must watch, I tape the show and use a lot of fast forward, therefore decreasing the amount of exposure.

11. Plan ahead. It helps!

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This article was originally published in FMOnline. This free online newsletter is only available to registered members.

http://www.fmaware.org 

New Bible study available August 1st

Posted on July 12th, 2008 in Choices by Jonnie Wright

Hungering for personal growth?

Struggling with a chronic illness?

Searching for a dynamic study?

 

 

No matter how healthy or unhealthy we are at this moment, we know that just around the proverbial corner change crouches ready to pounce. And with any change comes unavoidable choices. As we assess our past, present, and future choices, we experience personal growth. When we apply God’s Scriptures to our daily situations and behaviors, we experience spiritual transformation. If we live our lives with knee-jerk reactions to our circumstances, the significance of our relationship with God diminishes through neglect. On the other hand, if we search for God’s truths, even while suffering constant pain, our spiritual choices become our lifeline. 

About the Author

While teaching elementary school for thirty years, author Jonnie Wright wrote innovative curriculum for both children and adults. She contributed to a national teachers’ magazine, received a grant in computer literature, and authored the Christian teachers’ workbook: Lord, What Do I Do With Sammy? Her daily struggles with Fibromyalgia, Chronic Fatigue, Irritable Bowel, Irritable Bladder, TMJ, and Burning Mouth Syndrome have led her to create the personal growth series: God’s Rx for Chronic Pain.Book One, The Silver Bullet ©2006, focuses on Jesus Christ being God’s prescription for the difficulties of chronic illness. Mrs. Wright provides supportive material for Bible study groups, called Good Tidings for Chronic Pain, across the U.S. She is retired and living in Rocklin, CA with her cat, Chatty.

Book orders before August 1st receive 15% discount and author’s autograph: jonnie@jonniewright.com

Hope at 60!

Posted on July 7th, 2008 in Life Issues by Jonnie Wright

I am turning 60 today. When I was 40, I complained that I felt like I was 60… now that are it… well, I’m 60 but I feel like I am 40.

Be encouraged that while FMS will change your life-style, once you’re on the other side of adjusting, you’ll have as many good days as bad. My new life-style doesn’t include a number of things I had to give up: racquetball, workshops & seminars, classes at the local college, going to church, etc. Yet now I have aqua exercise, awesome friends, and a chronic pain support group. Jesus is very much part of my life-style, and I get to research the Bible as I write my books.

Yes, I have a new life and it’s fulfilling… it just doesn’t look like I thought it would. So I’m here to prove that you can teach an old dog new tricks :Oo

7.7.08 by Jonnie Wright

Fibromyalgia Patients Having Surgery

Posted on July 7th, 2008 in Health News by Jonnie Wright

Precautions for Fibromyalgia Patients Having Surgery:

Fibromyalgia causes “central sensitization” which results in pain amplification. The precautions suggested below are all designed to prevent triggering the central sensitization process.

  1. Ask that you be given pre-operative opioid pain medication about 90 minutes before your surgery to minimize central sensitization.
  2. Two to three grams of magnesium sulfate given intravenously over a period of 45 – 60 minutes might also block central sensitization.
  3. Sometimes increased postoperative pain in FM patients is due to the use of a muscle relaxant drug called succinylcholine during surgery. Talk to your anesthesiologist about other options if this drug was to be used.
  4. The arm with your intravenous line should be kept near your body, not over your head or otherwise away from your body. It’s best that you not be kept in any one unusual position for any longer than absolutely necessary.
  5. If an endotracheal tube is used to help you breathe during the procedure, care should be taken to minimize neck hyperextension. Request that you be given a soft neck collar to wear.
  6. Request that a long-acting local anesthetic be infiltrated into your incision. Even though you won’t be awake to feel it, if the area is not anesthetized, pain impulses will be sent to the spinal cord and brain, which can trigger central sensitization.
  7. When you leave surgery, a PCA (patient controlled analgesia) pump should be in place. In most cases opioid medications should be administered during the first few days following surgery. PCA pumps allow a certain amount of medication to be delivered continuously, with the added feature of letting the patient add extra medication at pre-set intervals as needed. As a fibromyalgia patient, you will probably need more post-operative medication than most and for a longer duration.

While no one can promise you a pain-free surgical experience, patients whose surgeons have worked them and followed these procedures report a better recovery experience than they had anticipated.

____________
Sources:
“Guidance for Fibromyalgia Patients Who Are Having Elective Surgery. Oregon Fibromyalgia Foundation. 2002.
Squires, Sharon. “Some Important Considertions for Fibromyalgia Patients About to Have Surgery.” National Fibromyalgia Association. 2003

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